Three is painful.

Jason often teases Ainsley by telling her that he refuses to let her grow up, that she must remain five years old forever. She always scrunches up her nose and retorts with a resounding "But Daddeeee, I'm six!" And while I wish we could keep her as she is now, forever adoring and still somewhat obedient, I know this is just not possible.

Jackson, on the other hand, cannot grow up fast enough. We have had a very difficult time of it lately with Mr. Man. He is absolutely defiant, onery and just plain mean sometimes. We have tried every means of discipline we know, some we have been educated on by our pediatrician, and all have failed miserably. Not only has his behavior not improved, it has actually gotten worse. Something I didn't think was possible.

We are absolutely at the end of our ropes. Terribly frustrated and looking for both someone to blame and someone to help. We catch ourselves barking at each other, and remind one another that this is a terribly stressful time for us, one we hope to get through quickly and without any permanent scars or innocent casualties.....

I am scheduled to attend his parent-teacher conference this morning. Last week his teacher sent me an email, after I inquired about coordinating efforts between school and daycare. Here's an exceprt:

"We are working with Jack on some individual goals such as answering yes/no questions and pointing to items when given a choice of 2 to 3 to demonstrate understanding of the lesson/story....He is not attempting to repeat most words, but he will attempt to repeat/vocalize some words throughout the day....One of the main areas I am focusing on is getting to participate in the group life of the class with less adult prompting. He does not like to play on the play ground, I often walk with him up the stairs and go down the slide with him to get him started as he wants to sit on the bench. We are working on how to play with the toys in the classroom and the playground equipment.

He does much better when in a one on one situation with the adult as he often does not follow directions given to the group but needs them repeated to him independently. Jack also requires extended wait time to respond we usually give him 20 to 30 seconds before prompting again. With the extended wait time he will attempt to answer the question/follow the direction the first time given 50% of the time."

This morning when dropping jack off to daycare, his teacher informed me that before his bus comes in the morning he won't play or interact with the other children. He sits quietly in a chair against the wall, and watches. The same in the classroom, with little, if any, interaction with his classmates. But his behavior at both daycare and school is angelic. Really. He is the perfect little helper according to his educators.

We have come to the conclusion that before we completely lose our sanity, Jason and I have to talk to someone. A therapist who specializes in dealing with the challenges special needs children often present. Our gracious Pediatrician, Neurologist, and daycare Social Worker are all searching for such a person. Surely one exists somewhere.....

And the results are in...

Well not all the results, but one of the results came back. Jack's genetic screening for AT came back negative! Such good news, and I am very relieved. There is however one test still pending, the screening for the mutation of the Filamin A gene. We are hopeful this one will come back negative as well. No telling how long it will take to those results though as a research lab at Hopkins is performing the test. That translates to: they work at their own pace. There is absolutely no rush. So we continue to wait.

I can no longer avoid it.

I've been trying, in a very un-American way, to avoid the election coverage. I have my own political views and beliefs, which are for the most part none of anyone else's business. I hate talking politics - probably because I feel remarkably uneducated on the subject of and issues related to. But I can't stand it any longer.

The republican nominee, who's name I cannot even bring myself to mention, is unbelievably shallow. Saying that he/they understand what it's like to have a special needs child because the VP nominee's infant son has Down Syndrome is like saying that because Jason's father died of cancer 15+ years ago, I understand what it is like to have cancer. PLEASE.

I cannot possibly do this topic justice. Thankfully someone else has. I urge you to read I Know Nothing About Special Needs. Really - worth the time.

Still waiting.

No I haven't forgotten to update with the results of Jack's latest round of genetic testing. We simply haven't received them yet. And while I realize "these things take time", as mentioned multiple times by our Genetic Neurologist, I am becoming increasingly impatient with the process. Testing that was to take four weeks has now stretched on beyond six weeks and counting. I am a patient person, but enough already. Given the possible outcomes, every single moment really does count. A lot.

I hate to brag...

But I will. I rock. No really, this time, I've outdone myself.

I returned from Miami yesterday, tanned, and somewhat rested, to my usual chaos. Jason came home from work and was clearly in a grumpy mood. Noting this, I called him this morning on my way in and asked why he was so blue. He simply said he just needs to get out and have some fun, you know unwind a bit. So when I arrived at work, I was determined to find something for him to do to blow some steam off.

Some of you may know both of the following facts: Jason is a HUGE Phillies fan. The Phillies are currently in the race for the pennant. Game two of the NLCS is being held in Philadelphia this afternoon. So I went on Stub Hub (Ouch!) and bought two tickets to the game. I called one of Jason's closest friends, Scott, and asked him to meet Jason in Philly for the game. Then I called Jason. I could hear the smile over the phone and knew I had hit a home run (sorry I couldn't resist).

So he's off to Philadelphia to have some fun - and I am sure he'll do just that.

Back from the oblivion

Hello dear readers. Thanks for staying tuned during my brief intermission. I've been short of time lately and completly unable to blog. And I've missed it terribly.

This past Wednesday was Jack's first day of "special ed" classes. I drove him to daycare at the usual time and proceeded to wait for the bus to arrive. Not trusting two county employees I've never met, I felt the need to physically be there for his first bus ride.

We've been prepping for weeks, reading stories about buses and schools, even one "social story" written just for Jack by his new teacher. And when the big day arrived, he was excited (as far as I could tell) to ride the bus. I kept asking "Jack, who is riding the bus today?" and he would respond with an "aak" and point to himself.

When the announcement came over intercome system at school that "Jack's bus is here" his face lit up with surprise and astonishment. As we walked outside, the surprise was quickly replace with fear and the screaming began. The two county employees were cordial and tried their best to assess the situation, but there was no comforting him. I only had time to kiss him good bye and fasten his seat belt. He was completely petrified with fear and there was nothing I could do about it. The bus had a schedule to keep and I had to get off so they could move on.

As I stepped off the bus, the doors closed and the tears flowed. I couldn't help but feel that I failed him completely, that I made the wrong decision. I wanted to get in the car and chase the bus down. But I knew that was not the right thing to do. Instead I got in my car and cried.

Jack's journey has been a long one, full of challenging moments requiring more strength than I ever thought I had. Taking him in for general anestesia, for example, is never fun or easy. The stuff smells like jet fuel no matter what flavor lip balm they smear around the edges. But the fear doesn't last long, and I know he won't remember the experience when it is all said and done. There was no such comfort putting him on the bus, facing similar fears. I was a train wreck for the rest of the day. My nerves were raw and distraction from my concern was difficult to come by.

The next day, I chose not to be present for the arrival of the bus. Heidi, the social worker at his daycare who I've come to rely on, filled me in with the details that day. "He was great. Happily walked right on to the bus without a care in the world." Wow. He was playing me all along.

Post Time

I desperately need to post. I yearn to post. However, I have no time at the present to write a proper post. I am travelling to Miami on Sunday, again for business, at which point I hope to take some time by the pool to blog. Pray for sunny weather, the last time I was there, so was Fay.

Judgement

I hate to do this, but I must. I've simply become too bitter to not blog about it and hope for some relief.

I have recently gone through a nasty break up - no not with my adoring husband. A person who I considered one of my best friends, just used an overly stupid excuse to explain that she no longer wants to be my friend. Her excuse? She doesn't like my husband. No really. And while her email describing her issue with Jason was more detailed than that, the point was pretty much the same. (And yes, it was delivered via email.)

Now I have unbelievably great girlfriends, some of which have husbands who, well, shall we say they aren't the most considerate of men. I don't pass judgement on their relationship, they are all big girls and can handle the situation. And if, God forbid, they come to a point where they can't or don't want to handle it any more, then I am confident that they know how to solve the problem. (I don't mean using a mediator by the name of Smith and Wesson either.) And should that time come, if they need my support then they will have it. Until then, I am a compassionate friend, listening, offering my opinion when solicited (and sometimes when not solicited) but NEVER judging. That's simply not what friends do.

This particular former friend, seems to think it is okay to pass judgement, and apparently thinks I should be grateful for her friendship and input. Well, no thanks. And while there is so so so much more I would love to vent about regarding this situation, I won't. Simply put, the friendship no longer exist. I don't acknowledge her, she avoids me, and we move on. What a waste.

Happy Birthday Jack!

At about 3:00 AM on this day, three years ago, I woke Jason and informed him "It's that time". After a few moments of incoherence, Jason shook off the sleep and was up and dressed in a flash. We packed up the car and calmly drove the short route to the hospital. Later that day,at 6:01PM, Jackson Elliott Bender entered the world. It was the beginning of a difficult but beautiful journey.

So happy happy birthday to my Boy. I hope this day is filled with all his favorite things: cars, trucks, books about cars and trucks, Elmo, Blue, Rocket, trains, lawn mowers and vacuum cleaners.

Thanks to those of you who have recently helped us celebrate all things Jack; Our happy HEALTHY baby Boy.

Echocardiogram

Good news! Jack's echo was completely normal. This is obviously great news, however the genetic testing we drew blood for on Friday will ultimately give us the best indication regarding any possible cardiac implications. Three weeks and four days for those results.....not that I'm counting.

Forever Five

Jason and I tease Ainsley that she will be five years old forever. That we've decided she won't have any more birthdays, because we really enjoyed her at the age of five, and we want to continue to enjoy it. So no more birthdays for her. She usually scrunches up a silly face, and says "You're kidding. Right?" We just give her a smirk but we both know we're not really kidding.

We drove to New Jersey on Saturday for one of our dear friends' daughter's birthday party. She and Ainsley are nine months apart and get along famously. It was to be a sleepover (for us all) so we were (over)packed appropriately. On the drive up Ainsley was talking to us, the topic I don't recall. As I sat there listening to our Girl, it was hard for me to remember she is six years old. Not because the manner of her speech, but because I can hardly believe she's six. I keep picturing her little cherub face at three years old surrounded by her long wavy dark blonde hair. I am sometimes shocked to open the car door and see her so grown.

But I am thankful for those stunning moments that remind me to slow down and enjoy her often quirky little ways. It is nothing short of remarkable that, for the amount of time Jackson and his appointments have demanded, she is as well adjusted as she is. She has shown no bitterness or jealously towards her little brother or the effort he requires, and she would have reason to pout, but she chooses not to. At six years old, she's more mature than many adults I've known.

Follow up Friday

As mentioned in my previous post, Friday was spent dashing from appointment to appointment along North Broadway.

Jackson's echocardiogram finished up around 10:15 (we don't have the results yet), just in time to dart down the street to KKI for his PT appointment. He has a new therapist there, so it was very much like starting over again. I'm usually more prepared for such things, providing his mildly extensive history via thumb drive or spreadsheet. (Seriously) But Friday I didn't have either with me, so I had to go through it all again verbally.

Once finished with PT, we trotted on back up to the main hospital to pick up a copy of Jack's latest MRI. Ronni (Genetic Neurologist) has suggested we request Dr. Bill Dobyns of Chicago to read it as well. Dr. Dobyns has agreed, and had some intersting input on the unofficial report(quite contrary to Ronni's). So I'll be sending the CD-ROM of images to him (along with a "donation" to his lab - as required by the good doctor).

We were attempting to do Jack's blood draw prior to our next appointment at KKI (Fairmount campus) but due to the unusual nature of the testing to be performed it was taking the phlebotomist quite a lot of time to sort out the coding. So we gave up and went to see Dr. Lipkin. He didn't have anything truly profound to say, although he noted that he was very pleased with Jackson's increase in verbalizations. He also said that he had never seen heterotopia or hypoplasia before, something that was quite astounding to me considering he is known as one of "THE" foremost developmental pediatricians in the country.

Once we finished with Dr. Lipkin, or rather he with us, we trudged back down to the main hospital to complete the blood draw. Luckily, the paperwork and coding had been ironed out, and the draw was quick, though not painless.

Four weeks for the results, although once again no seems to think any of the tests will reveal new information.

Celestial alignment

We will tomorrow, have the great pleasure of spending almost all day (9:00am to 3:30 or so...) downtown on the campuses of Johns Hopkins and Kennedy Krieger. We have a string of appointments and therapies all of which, more of less, occurred by happenstance. It is remarkable luck to have so many appointments scheduled on one day - less trips downtown, less work missed, less parking to be paid.....the kind of luck brought on by proper alignment of the celestial bodies.

Let me clarify a few things...

First and foremost, I know it could be worse. We are very fortunate that (for the most part) we all have our health. However, telling myself that hasn't seemed to ease my melancholy of late.

Secondly, several people (whose names will remain anonymous) have remarked that they have chosen not to read the blog, because "well, its just so hard." One individual even went so far as to call it depressing. Really? What a revelation. I'd like to scream at these people and say "Gee you think?!" But I refrain. I created this blog as more than a method of communicating Jack's issues. It is my own personal sounding board. And while not all the entries are about Jack, he does continue to be the biggest source of my own personal strife. It was only recently, after discovering several other blogs kept by special needs parents, that I figured out it is okay to have an insane range of emotions when dealing with your children (any children - not just special needs children), and even more okay to blog about it.

Thirdly, please don't feel sorry or pity for our situation. As I pointed out above, it could be worse. I have my days when I don't mind the uncertaintity so much, lately those have been fewer and far between. Somedays I may be less than prompt in responding to emails, less than perky when greeted out and about, or just plain disheveled looking, remember this blog and you'll know why.

Our meeting with Ronni, Jackson's Genetic Neurologist, went pretty well. He seems unconcerned about the possibility of AT, and feels confident that we will receive a negative result when we do the genetic screening. And we will be doing a screening for AT as well as the Filamin A genetic mutation. Friday, I'll be dashing down to Hopkins first thing in the morning for Jackson's echocardiogram, blood draw, and physical therapy session at Kennedy Krieger. The results of the blood draw won't be available for three to four weeks.

We drove the kids to my parent's house in Kentucky for the long weekend. It was a nice reprieve from the daily grind, and we were fortunate enough to enjoy a visit from my brother and his family. While we were there we received some heartbreaking news. Our friends, Rick and Amy Bucher, lost their three year old daughter to neuroblastoma. Arden battled fiercely for the last ten months while Rick and Amy researched and fought for every treatment possible. In the end, the disease was just too much. We are deeply, deeply saddened. I could blog about this for a very long time. Amy and RIck are truly amazing people and Arden was a little ray of pure sunshine. But you would be better served to read about their unflappable spirit yourself. Arden's page is linked on my blog page - it will be time well spent I assure you.

The sadness of Arden's passing is more overwhelming than I ever thought it would be. Couple that (although this pales in comparison) with the newest round of information about Jack, and I have found myself in a bit of a melancholy funk. Not exactly sad, but far from contentment.

Fragment I

My thoughts are, at best, very scattered now, my mind racing a million miles a minute. Bear with me.

I have read, reviewed, and re-read the email from Jackson's Genetic Neurologist detailing the findings from his MRI. After the most recent re-read, I realized I completely missed the first finding, Unilateral Cerebellar Hypoplasia. So I did what any technologically savvy mother would do and I Googled it. I found it on the NINDS website, which can sometimes be too much information, if you know what I mean.

It was alarming to read the description, particularly because of the reference to Ataxia Telangiectasia which has been a topic of discussion for us before. Jackson now has two of the classic markers of AT, a thought which leaves me anxious. After careful consideration and a discussion with Jason, I emailed Ronni (Genetic Neurologist) to clear the air. Fully expecting a scolding for spending too much time online, the reply I received was not so light hearted.

His reply was as follows:

"Despite the finding of unilateral cerebellar hypoplasia, I still think that Jackson does not fit the clinical phenotype of children with AT, the MRI findings in patients with AT (regarding the cerebellar hypoplasia) are much more pronounced and probably more importantly, as far as I know, have never been shown to exhibit periventricular nodular hypoplasia. I also think that the periventricular nodular hypoplasia finding is the most significant finding on Jackson's MRI.
Having said all of this, as we have discussed before, most of genetic syndromes present with a wide variety and Jackson is still young enough to not present with the all the classical features of AT. Therefore, if you want us to rule this out, we can look into it."

Translation: We cannot say AT is not a possibility. They only way rule it out is to perform expensive time consuming genetic testing. An option we are set to discuss with Ronni this afternoon in his office.

A Googling We Go

Forgive me if this isn't the most clever of posts, but my brain is swimming with medical jargon and new bits of information resulting from my latest Googling marathon. (It should be an olympic event.) Here's what I have come up with so far:

• Unilateral Periventricular Nodular Heterotopia is a conditon of the brain in which gray matter is found in areas where the should be white matter.
• The outer layer of the brain is known as the cerebral cortex or the ‘grey matter’. It covers the nuclei deep within the cerebral hemisphere known as the ‘white matter’.
  Grey matter is the closely packed neuron cell bodies form the grey matter of the brain. The grey matter includes regions of the brain involved in muscle control, sensory perceptions, such as seeing and hearing, memory, emotions and speech.
  White matter is the neuronal tissue containing mainly long, myelinated axon, is known as white matter or the diencephalon. The nuclei of the white matter are involved in the relay of sensory information from the rest of the body to the cerebral cortex, as well as in the regulation of autonomic (unconscious) functions such as body temperature, heart rate and blood pressure. Certain nuclei within the white matter are involved in the expression of emotions, the release of hormones from the pituitary gland, and in the regulation of food and water intake. 
• The genetic mutation that causes this condition also has very serious cardiac implications, causing narrowing of the arteries and heart failure.
• Along with this diagnosis comes the official label "mentally retarded".  The severity of which varies from case to case.

We are somewhat relieved to have some answers and realize the news could have been much, much worse.  On the other hand, this is not the news we were hoping to hear.  We will be taking Jack in soon for another round of genetic testing and an echocardiogram and we'll be sitting down with Dr. Cohn (his Genetic Neurologist) to go over the actual scans.  The results of these appointments, along with the information we already have, should help us process the diagnosis and come up with a plan of action.

MRI Results

We finally have the results of Jackson's MRI from last week. Dr. Cohn, his Genetic Neurologist, called me this morning to discuss it. And this time there actually are some findings to discuss. Here they are in official medical jargon:

Jackson has unilateral right cerebellar hypolasia with intact left cerebellar hemisphere and vermis (although the inferior vermis is lightly small). He also has subtly smaller volume of the left cerebral hemisphere, probably related to cerebellar-cerebral connection. Additionally there is a finding of a left parietal periventricular nodular heterotopia.



What does this mean? I've only had a few hours to digest all of this - and even less time to research it. The basics that I understand at this point are as follows:

• The volume of Jackson's left hemisphere is slightly diminished in size.
• His inferior vermis on his right side is slightly small. (I don't know what this is either.)
• In his left hemisphere there is gray matter where there should be white matter.

This last finding is the most significant. This is a Neuronal Migration disorder, meaning that when the cells of Jack's brain were forming in utero, some of the cells didn't get the message as to where they should be and what they should be doing. Hence the gray matter where the white matter should be. This mislocation of gray matter causes developmental delays, gross motor issues, hypotonia, speech and language delays, and seizures. And while Jack has only had one seizure, post operatively there is significant reason to believe he will have more seizures.

As with many neurological disorders, the severity of issues varies greatly from patient to patient. This condition is rare and nearly never found in live males. Most afflicted males die in utero.

During our conversation this morning, Dr. Cohn said we would be doing further genetic testing specifically, the Filamin A gene. It is very likely that we will find a mutation of this gene, given this is the most common cause of these malformations.

I suspect I will find more information on these issues. I spent a brief period of time Googling the subject this morning and now have a stack of reading material to get through while I wait for my flight home.

I am literally and figuratively stuck in Miami. Waiting for the storm to come, it is remarkably quiet on the normally buslting streets. It seems like a Hollywood set, as I look down on the emptiness below. I can hear the wind whipping around the building. Shortly, I will feel it sway.

I've still had no word from the Genetic Neurologist regarding Jack's scan from last week.

So I wait; for results, for possible evacuation, for freedom from the stifling air that surrounds me.

Travel Karma

I set off this afternoon for the airport, knowing quite well that many flights to the Sunshine State were already delayed. My mind was prepared for a long afternoon at BWI waiting and waiting for my flight to depart. To my great surprise, my flight was on time, thus at 3:05 PM I was on a plane to Miami.

The flight was bumpy, particularly towards the end, which would normally bother me, but I didn't really mind it so muh, feeling lucky just to have left the ground in the first place. When the plane landed, I grabbed my bag from the baggage claim belt and headed off to the rental car desk. I am a "Preferred" member so I don't even stop at the desk. I check the board of names and go straight to the car- where I am really disappointed to find a Ford Focus waiting for me. I wheeled back to the desk and politely asked the attendant if he could give me a different car. After a few minutes he winked and told me the location of the new car and told me to "Have fun". It wasn't until I saw the glow of the cherry red convertible Eclipse that I understood what he meant. I'm not normally a convertible kind of girl but I thought it would be fun. So I hopped in the car and hit the road. I turned on the Sirrus satellite radio to find The Smiths playing and cruised on down I-95.

After checking in to my hotel and ordering dinner, I've settled in for the evening, thankful for my good travel karma. However, tropical storm Fay is due to make an appearance in the area as early as tomorrow afternoon and apparently will be in no rush to leave, potentially hanging around as late as Thursday morning. I am due to fly home Wednesday afternoon, smack at the height of the storm. It seems my good travel karma may be coming to an abrupt and ugly end. But for now I'm here, comfy and cozy and ready to sleep for hours.....

Late night with Ms. Elizabeth Bennett

We spent the day at a cook out hosted by one of Jason's co-workers.  It was a casual gathering, one which we were privileged to be included in, of the hosts' friends and family and we found ourselves at great ease with everyone.  During our Bocce Ball rematch, Jack was bounding around, chasing the feral cats, occasionally throwing his own ball into the match.  Shortly after the seventh point, I looked over to find that Jack was in the midst of another nose bleed.  The game stopped, we tended to our boy, at which point we packed everyone up and headed home.  The rest of the evening was uneventful.

After putting everyone else to bed, I decided that staying up a bit later to lose myself in my favorite Jane Austen movie and blog a bit would be worth the lost sleep.  After blogging my thoughts and getting teary eyed at the overdue union of Ms. Elizabeth Bennett and Mr. Darcy (why is it we're not told his first name?), I closed the laptop and wandered up to bed.  On my way, I over heard Jack whimpering so I poked my head in to check on him.  His face was covered in blood and the bedding smeared with it.  After twenty minutes of tending, changing, cleaning and soothing, all was right again.  

I am now officially worried, words that hardly describe my concern.  I've thrown a load of laundry in and have found that Oxygen is showing Ms. Austen's most popular work again, for which I am ever so thankful to try to lose myself in, again.

You are here.

I am happy to report that our IEP meeting went really, really well.  They have determined that Jack does indeed need five days a week of intensive preschool.  Included in that is three, one on one sessions of speech and language and one session each of OT and PT.  According to several people who have experienced IEPs, this is an incredible plan, aggressive and realistic and we are extraordinarily happy with the outcome.

On another note, we were at Hopkins on Thursday for Jack's brain MRI.  With the exception of an unexpected intubation, everything went relatively well.  Prior to this procedure, I wasn't concerned at all about the results, and was somewhat confident that there was no reason to be concerned.  The MRI was recommended by both Jack's neurologist and our developmental pediatrician as a cautionary measure to make sure we've haven't missed something obvious. When we left the recovery room, the nurse was unusually persistent, encouraging me to "be the squeaky wheel" with regards to getting the official results.  So in my usual thorough way, Friday morning I emailed our Genetic Neurologist asking for the unofficial "all systems normal" email.  (Otherwise it is a month or more to get the official version in the mail.)  His response was unusually fast and not the standard "everything was normal".  Instead I received an email stating,  "I'm having one of my colleagues review the images".  I was clearly taken back a bit.  And while I am trying desperately to not obsess about this, it is difficult, if not nearly impossible to do.  

For those of you who are familiar with MRIs, cat scans, or xrays, you likely know that the doctor who orders the test is not the doctor who reads, interprets and reports on the images.  And in this case, the report and scans were sent to our neurologist Thursday afternoon shortly after the procedure was finished.  So the asking of a colleague to review the images is not part of the normal protocol, and has me a bit concerned.  Again, I am trying very, very hard not to assume the worst.  I am doing my best to convince myself that he is just be extraordinarily thorough. 

Top that off with the fact that Jack had his first nose bleed last week and has had two since then, and I can't help but be a little bit neurotic about leaving tomorrow for another business trip to Miami.  Normally, I welcome three nights alone in a hotel room and time by the pool, a bit of a respite.  However, at his moment I have no desire to be anywhere but here.  

Flip-N-Talk / Flip-A-Switch

Our visit to Kennedy Krieger today was pretty productive. The SLP we met with, Nancy, was really helpful and had some good things to say about our Little Man. That being said however, we still came away with a new communication "device", a Flip-N-Talk. This "instrument" is pretty rudimentary yet very user friendly and highly adaptable. So really, I can't complain.

Except I feel like with every super-duper-sub-sub-specialist appointment we go to, I keep waiting for someone to tell me that we don't actually need to be there. Any moment now I expect any one of the doctors or therapists to tell us that this is all over kill, that he doesn't really need all this hoopla (that's a technical term) and that his delays are exaggerated by my over stimulated parental senses. I keep waiting for the "Oh wait, this is why he has global developmental delays" statement and someone to flip a switch or give us a prescription that magically activates all that Jackson is delayed in. Kind of like when you're having computer problems at work and you finally give in and call the help desk, only to have the technician (a term loosely used mind you) show up and reboot the computer, at which point you discover that there isn't anything wrong with it at all. I keep thinking that someone will reboot Jack and everything will be fine.

Don't worry, I do realize that's not how it is going to work. And that work is exactly what we have ahead of us. Lots and lots of work.

A Blog in Three Acts: Act III

You may wonder why I have titled this and the previous to posts as I have. Well, to be perfectly honest, I had three specific things I wanted / needed to blog about. Collectively it was too much to be posted at one sitting, so I broke it up in the cleverest way I could. (Sad, because it really isn't that clever is it?)

Scene I of the third act comes to us care of our friends at Baltimore County. As you all know, Jackson's IEP is scheduled for next week. During our preparations we've been reviewing his evaluations and other paperwork which makes up the mountain sitting on our family room bookshelf. Our review of his PT assessment put me right over the edge of angry.

In her assessment of Jackson, the therapist states that Jack consistently meets the skill set of a 19 month old, with scattered skills up to a 32 month level. But during her summary she ranks his overall skill level at 32-35 months. In order for Jackson to qualify for services he has to have a delay of 25% or more. An assessment of 32-35 months is an impossible statement. And so I emailed her (and our service coordinator) to find out how she came to this conclusion. Her response? "Oops". Really. Six other county employees have seen this report - no one else has even commented. How in the world can an organization function like that? Particularly when the level of assessment determines eligibility for services. Does anyone really READ the assessments? (The answer seems a bit obvious doesn't it?)

Scene II opens with yet another email to our county friends, a gentle reminder that the IEP has been changed from 1:00pm to 9:00am. (I can't assume anything when it comes to county communication skills.) I was floored when the responses rolled in. "I didn't know it had changed - I can't be there at that time". "I'm on vacation". "I had no idea it changed. I hope the visual coordinator can still come".

Now lets keep in mind that I've made no secret of the fact that I expect this to be an unpleasant experience. Our service coordinator has told me repeatedly that there is nothing to worry about, "it isn't as bad as the stories you've heard". Forgive me if I'm not trusting of that statement. Their track record thus far is less than convincing.....

A Blog in Three Acts: Act II

Some of you may have read one of my previous posts about the brave and beautiful Vicki Forman, whose son, Evan passed away two weeks ago. In it I posted the link to her very special article "The Mother at the Swings". It has moved me in many ways and has been hard to forget.

She wrote about something I've never given any thought to, but have certainly been affected by. In her article Vicki talks about the premature birth of her son and how the social worker at the hospital warned her about the reactions she would likely receive from friends and family. There were three categories given: The rocks, the wanna-be-theres, and the gingerbread men. People who you once thought were your rocks could unexpectedly turn into gingerbread men, running away as fast as they can when they learn of your child's disabilities.

This is a sad reality for many parents of special needs children. I have recently experienced it myself with someone who was once, one of my most solid rocks. Now I am avoided like the plague - with no phone calls, no emails, no contact at all. And I am heartbroken. I have tried in vain to reconnect, only to be left with a string of unanswered emails and unreturned phone calls. It wasn't until I read "The Mother at the Swings" that I realized what had happened. That realization stings me to the core and I am at a complete loss.

I am however, thankful, so very thankful, for the scores of friends, family and coworkers who do support me and my family. And while the sting is still there, knowing you are all there, reading the blog, leaving your comments, and emailing just to say "Hi" certainly helps soothe it.

Q: What kind of friend abandons a friend in the midst of difficult times?

A: Someone who was never really a friend to begin with.

And that is truly a tragedy.

A Blog in Three Acts: Act I

First there is good news and there is bad news.  The good news: At his PACT assessment today, we learned that Jackson does indeed qualify for their daycare.  The bad news: PACT does not allow for pick up and drop off by Baltimore County.  Translation: I'm in a pickle.  A big sour puckering pickle.

In my mind I had already worked out the details of my daily routine, should we move him to PACT. I would take Ainsley to school, then drop Jack at PACT on my way to work.  Baltimore County would pick him up and take him to preschool, and promptly deliver him back to PACT around 11:45am, where he would stay for the remainder of the day.   And while it would be very hectic for me, it would be possible.  Now I'm not so sure.  Baltimore county schools start round 9:00am (give or take 15 minutes).  Which means if I have to drop Jackson at school, my work day will not start until 9:30 or so.  If I have to leave by 4:30 to pick up both kids by 6:00pm my work day is cut impossibly short.  I'm not sure how we'll manage, but we've decided that we have to make it work.  It is unfair to neglect him of any resource that could potentially be an integral part of his development because of scheduling issues.

Red Bull will likely become a morning staple for me....

Cramming

We are in the midst of preparing for several major Jackson happenings. The first is his official assessment at the PACT World of Care Daycare to establish his eligibility for the program. I'm not too worried that he won't qualify, everyone (including the social worker at the daycare) seems to think he's over qualified, never the less, we will go in as prepared as possible.

The second happening is a visit to and assessment by Kennedy Krieger's Assistive Technology department. The purpose of of our trip downtown on Monday is to explore other state of the art communication devices that may be useful for Jackson in the classroom and other public settings.

The dreaded IEP is scheduled for the morning of Wednesday the 13th (lucky number 13!) During which we will be surround by twelve county employees (administrators, educators and therapists) telling us (hopefully in a well thought and educated way) what services Jackson needs and what services they're willing to give him. We're pushing for an intensive 5 day program but we've been warned there is no guarantee we'll get that. (These people don't know me very well...)

And then rounding out the week, next Thursday Jackson and I will travel the well worn route down I-83 to JHMI for another brain MRI. The doctors are fairly certain that everything will look normal, but it has been over two years since his last MRI and they want to be sure nothing unexpected has happened in that crazy little brain of his.

In preparation for our upcoming educational encounters, Jason and I are sitting down over the course of several evenings to go over all the paper work; The private and county evaluations, doctors reports, standing orders, Jackson's previous IFSP (educational plan), an acutal IEP, Parent advocacy laws and rights, etc, etc. It is of the utmost importance that we are a completely unified front in our battle to get Jack the resources and services he needs. Preparations which seem a bit like cramming in college - although we haven't pulled an all nighter - yet.

Oh and I forgot to mention...

I was pretty swept away with my previous posting, so I completely forgot to mention that Jack is indeed sick - again.

Yesterday evening he spiked a fever just before dinner, and just after dinner proceeded to wretch as though he was trying to vomit. Well, apparently he was trying to vomit and has since succeeded in doing so several times today. I have just about got it down to a science now, the first time taking me by complete surprise (since he's not physcially supposed to be able to vomit) thus resulting in a change of clothes (for both of us). It seems when his fever starts to spike his propensity to vomit increases ten fold. Between doses of Motrin thing seem to quiet down, but when the dose begins to wear off, watch out. So we're trying to keep him comfortable and vomit free as aspirating during an eruption is a pretty big concern.

I am working late this evening, just trying to keep up (and failing miserably at it). Ainsley B comes home tomorrow from her two week adventure at Mum and Papa's (my parents) in Kentucky. She actually called last night to ask if she could stay another week! Imagine a six year old asking such a thing! I was flabberghasted. It would seem she's having the time of her life being the only Grandchild around....

The Mom at the Swings

If you've read this already, please indulge me for a few minutes. There is a very moving column/blog written by Vicki Forman. She is the mother of Evan Kamida who passed away July 24th. Today would have been his eighth birthday. He was a special needs child, and Vicki has been for some time now eloquently blogging about him, their struggles and their triumphs.

One of my dear friends sent me this. I had never, before today, heard of Evan or Vicki. But after reading her columns, blogs and the tremendous number of tributes to Evan I feel like I know her (and she me) very well. It seems we Moms are all made out of the same crazy strong material and those of us with special needs children all struggle with the same issues. Thank you to my rocks who continue to support me, the wanna-be-theres for the thought, and the gingerbreads for not wasting my time.

PACTing Up and Moving On.

On Monday I visited the PACT: World of Care Daycare center in Woodlawn. It is affiliated with the Kennedy Krieger Institute and is specifically for kids who are medically and developmentally “fragile”. This was truly a bittersweet experience for me. I met the social worker at the front desk and she gave me the obligatory tour of the general areas (which I was really impressed with) and then we saw the room that Jackson would be in. There are six beautiful children in this room, whose issues range in nature and severity. The head teacher for the room is sweet and stern – providing consistent and helpful feed back for each child – with special adaptations as needed.

Before I left the center, I knew this is where Jackson should be. So the social worker and I coordinated our calendars and scheduled his official assessment. I gave his current daycare center notice this morning that the 22nd of August will be his last day there. I think they were a little shocked – as I had given no previous indication this was coming.

This will be a really positive change for Jackson. The center is absolutely committed to supporting (in any and every way) the development of the children there. It is however, another very difficult reality to grasp.

It is really painful think of Jackson as “one of those kids” – but at this point it is the reality we must live in. I have tried to be as optimistic as possible for a very long time, believing the doctors and therapists when they tell us he will catch up. The fact of the matter is they don’t know that for sure. No one does.

I feel really selfish for even blogging about this, and as I have blogged before, I know that things for Jack could be so much worse. But lately that realization has not provided me with much comfort. Instead the realization that he will likely not lead an easy life has stricken me with a great deal of sadness. I am sad that Jack has to struggle. I am sad that he will likely have a really difficult time with school. I am sad that he will likely be limited to lifestyle and career choices. I am sad that he will likely be called names, beat up and ridiculed by people who won’t take the time to understand the challenges he faces. And while none of these difficulties are absolutes, the further behind he falls developmentally, the greater the likelihood is that they will in time become reality. Time has now become both our enemy and our friend.

Reality Check.

This may end up becoming more a a ramble than a true blog, but I will try my best to keep it cohesive....

Firstly, I should explain, for those of you unfamiliar with state programs, how the Infants and Toddlers Program and the Child Find Program work. Infants and Toddlers (from here on referred to as I&T) is an early intervention program for children birth to three years old. They provide all kinds of services and for the last 2+ years Jackson has been receiving most of his Occupational, Physical, Speech and Language and Cognitive Therapies through I&T. Now that he is approaching three years old (Wow!) we have to transition to the Child Find Program. Child Find (from here on referred to as CF) works through the Baltimore County school system to provide the same services. There is a team of therapists, teachers, and sometimes nurses involved in the planning and executing of services for each individual participant of the program. Whew. That was a mouthful.

Some of you may have heard of and IEP (Individualized Education Program). We are about to embark on what I'm told is a very painful and frustrating process of "writing" the IEP. Now let me be really clear, we as the parents of the child in question have very very little say about the process or the outcome for that matter. Which is why I am quietly stalking information about the IEP process, gathering along the way little morsels of knowledge to arm myself with. It seems that the people who run this process are not the most objective bunch (again this is rumor - not first hand knowledge). I have fortunately stumbled across the most invaluable resource I could have ever wished for. Another parent who has been through much of what I have been through. Our Nurse Practitioner here at work has a son that just graduated from high school who apparently has had many of the struggles that Jack now faces. She is priming and prepping me for the long arduous fight ahead. There are a lot of rather unpleasant experiences we will likely encounter along the way. Best to be as prepared as possible.

The immediate fight is the transition itself to a whole new team of therapists and educators who will evaluate Jack and his current skill level. Jack's Developmental Pediatrician at Kennedy Krieger has urged us to put him in the county preschool program for intensive five day a week therapies. That's the goal. Strangely enough he, nor I, nor Jason, really get any input on this decision. The "team" will review his most recent assessments and base their decision on those results. If we disagree with their final ruling, we can appeal this decision, taking it to court if need be.

Up until now most of our dealing with the county programs have been fine. Our service coordinators are kind and for the most part, forthcoming with the information we need to make educated decisions about Jackson's therapies. That is apparently not the case with the CF team. So I am gearing up for battle.

In the meanwhile, Jack's current physical therapist has become a problem. Over the last couple of months I have had several comments made to me regarding her demeanor towards Jackson during therapy sessions. Several parents and teachers have commented that she is “mean” to him and he is often seen screaming at the top of his lungs during sessions. I understand that a nearly three year old child can hardly be considered rational, but to hear multiple reports (with very similar descriptions) from different people is concerning. Initially I wrote it off as typical toddler resistance, however now that I am hearing the same reports from different people I have to question whether she should continue working with Jackson. Additionally, it concerns me that she does not have a normal routine / schedule for him, often emailing me the day before she wants to visit him. I doubt very seriously that there has been any work on running or jumping, and I receive very little feedback from her sessions. (There is never a yellow sheet left documenting her visit.) And in an email a few days ago, she made it pretty clear that she really doesn’t know what Jackson’s gross motor deficiencies are. It seems crazy for a professional to ask a parent what gross motor skills should be addressed at the IEP. Isn’t that why she has been working with him and assessing his progress? Fortunately for me, our current service coordinator is excessively good and was pretty upset about the situation when I sent her an email yesterday detailing the above issues. Unfortunately, it means Jackson will likely have to go without PT until he turns three, since it is summer and there are very few PTs working now, there isn't anyone to pick his session up.

Yet another issue we're working on, which had me pretty wound up a week ago, is daycare. At the current daycare center, the teachers are warm and kind, and dote on Jackson. The down side is that they don't push him. They almost pity him, and that is a huge detriment to Jack. To allow him to skate by without challenging him is doing him an enormous injustice. He needs reinforcement from his therapy sessions, from his teachers, his therapists and his family.

Well over a month ago, one of our Infants and Toddlers therapist suggested looking into PACT - a childcare center for physically and mentally disabled children. Since we're pushing for Jack to attend the county half day intensive preschool it would seem a waste to send him back to an environment that doesn't reinforce those sessions. So I contacted the PACT enrollment specialist and have made an appointment to visit. I'll go check it out next Monday and fill out yet more paperwork. But it seems to make a lot of sense - we need to give him ALL the resources we can right now, the most critical time for development, in hopes that will enable him to "catch up".

This daycare however, would be an enormous strain on me. Jason doesn't get to drop off or pick up the children because of his work schedule. I asked him the other day if he could schedule to drop off or pick up even just two days a week and he said no. "I really can't commit to that." For once I am not blaming him. I am blaming his job. The people he works with. And the people he works for. People who don't understand that having a child with developmental delays / disabilities requires time and energy from BOTH parents. People who are unbelievably petty about time off, vacation days, weekend work and holidays. When Jason tells me the hoops he has to jump through and deals he has to make so people are okay with him taking a VACATION day to help me sort through this mess, it reminds me of a greedy bunch of children swapping baseball cards. He has missed numerous appointments that he should have been at. Appointments that I needed support at. But because certain individuals will make his life at work even harder than it already is, he doesn't make it to the appointments he should. And I'm not talking about regular checkups. I'm talking about the visit to Kennedy Krieger to see the Developmental Pedicatrician who proceeded to break the news to me that Jack may likely be mildly mentally retarded. A visit that I could hardly walk away from at the end because I was so stunned. I felt like I had been smacked in the head with a 2x4. A liitle support would have done wonders for me.

I am now faced with deciding whether or not to stretch myself even further / thinner. Whether I can physically handle the drop offs, pick ups, lunch packing, sick days, doctors appointments and work. (Remarkably enough, I do still have a job.) Whether all this is worth it - will it make a difference for Jack and help him catch up or will it be too much for him to handle? Is it wise to surround him all day long with kids who are not "average", who are battling their own issues? Or would it be better to keep him at his current daycare so he can socialize with his "peers"? I have questions. Lots and lots of questions. And I've yet to find the man behind the curtain who holds all the answers....

Bye bye tube!

Of the many crazy events that ocurred last week, one of them was actually good. I am happy to report that while at daycare last week, Jack's g-tube fell out. Well, technically speaking, the ballon that holds it in place acutally burst thus allowing the tube to dislodge from his tummy. When I got the call from daycare I was initially alarmed and somewhat annoyed. I envisioned a quick trip home to pick up a new tube and then a visit to daycare to "install" the new tube. After about thirty seconds I came to the quick conclusion that I didn't want to put it back in. After all, he doesn't use it for anything except meds, and we can certainly administer those orally. So I instructed daycare to secure a piece of gauze over the site with medical tape. When I picked him up from school I cleaned the site, put some neosporin on it and applied a fresh piece of gauze. And that's it. All that time with the tube and the end comes so simply.

Now I know that our Pulmonary doctors would probably have preferred that he keep the tube through the winter, but honestly I don't think he needs it. Our pediatricians agreed and thus the tube is no more!

So this is what it's like to be alone?

Really people. I couldn't tell you the last time I was alone for more the an hour or two. It just doesn't fit into our schedule. So as my plane landed in Miami and I picked up my rental car, I couldn't help but feel there was something missing. I had all my bags, my wallet, my cell phone, all my reservation information, etc. etc... I finally realized that the fact that I did not have a child attached to my hip or hand made me feel a little incomplete. Now while I do miss my children terribly it was like a little slice of heaven to go to the pool this afternoon, pull up a lounge chair and plug in my iPod. And there wasn't even alcohol involved. I'm ever so slightly pink and starting to really mentally recharge. And that's a beautiful thing.

A testing we will go.

So today's visit to the Genetic Neurologist was fairly benign. We were hoping to have Dr. Lipkin's written report from last week's visit to Kennedy Kreiger but alas the mail failed us again. So while Dr. Cohn caught up on the usual topics, and was impressed to know that we are completely off of tube feedings, there really wasn't anything remarkable to report. He did end up ordering the test for Fragile X syndrome, so after the appointment we walked down the hall to the phlebotemist for a blood draw. (I think it is safe to say that was Jackson's least favorite part.) Additionally Dr. Cohn ordered a MRI for sometime in July to check for all the normal structures of the brain and eliminate the possibility of any abnormal structures. After our 60+ minutes with Dr. Cohn we zipped up I-83 back to Towson where I dropped Jack at daycare and then crawled into work. Thus the day began.

I keep telling myself...

I keep telling myself that things for Jackson could be SO much worse. And we've definately seen worse during our various visits and stays at Hopkins. We're lucky in many many ways. But no matter how often I repeat that to myself, some days are just hard. And last Thursday was one of those days.

On that particular Thursday, I took Jackson to Kennedy Kreiger for a follow up with his Developmental Pediatrician. After going through the usual testing the news was not as positive as I had hoped. Dr. Lipkin indicated that based on his current and past IQ scores, we may be looking a Mild Mental Retardation, and wants Jackson to attend intensive special pre-school through the county 5 days a week, supplemented with additional private therapies. This is the type of school that Autistic kids and kids with really severe developmental delays attend. And while Dr. Lipkin's assessment wasn't exactly a surprise, it was still very difficult to hear Jackson labeled that way. It was a less than subtle reminder that we have many challenges ahead of us yet (as subtle as getting whacked over the head with a 2x4).

Then in an email to our Genetic Neurologist I inquired about testing for fragile-x syndrome. Dr. Cohn is used to my random emails fishing for possible diagnosis and his response is usually, “He doesn’t fit the profile”. Yesterday it was “We’ll discuss it at your appointment next week”. It was a hard day.

Everyone has times of revelation in their lives. This was a revelation for me. I was recently passed over for a promotion at work. I was pretty devastated when it happened and vowed that I would work as hard I possibly could to prove I really deserved it. After Thursday, I've come to a really remarkable conclusion: I am so fortunate to have my job. A job that enables me to work from home when necessary and tend to Jackson's various appointments and therapies. Now is not the time for me to be gunning for a promotion. Now is the time to focus even more energy on my Little Man and what he needs to progress. I realize that for some of those who read this blog that my revelation is kind of common sense. I am however an over achiever in every sense of the word. I want to have it all and do it all. I knew growing up that I wanted to be a SuperWoman. You know, great career, great family, spotless house, great cook, community advocate, reliable friend and consumate hostess. And up until this point I was still operating under the assumption that I could do all those things. Now, I realize I have to make some sacrifices. It doesn't mean I'm going to lower my expectations of what I think I should accomplish in my lifetime, it just means that for now the timeline of those accomplishments has to shift a bit. The worst of it is that I feel I've been selfish having held out this long. (There's that Mommy guilt kicking in.) I just hope that my reluctance to postpone reaching my Superwoman status hassn't impacted Jack's education on a long term level.

So the next time you stop by our house it may not be as neat as usual, I may not be as organized as usual, and instead of cooking I may very well order out! (GASP!)

Hmmm, haven't we been here before?

So we've been clipping along at our usual pace, trying to keep up with the usual craziness. Jack's check ups are enough to use up both of our sick days (if Jason actually got any) and Ainsley is starting to venture into more and more extra curricular activities.

Back in March (sorry its been a while) Jack had new PE tubes put in his ears and his adenoids removed. The theory was that by removing his adenoids we would effectively eliminate / significantly reduce the number of upper respiratory infections / ear infections he would be prone to. Thus also reducing the number of lower respiratory infections and need for steroids. About four weeks ago, he woke up with some lovely yellow drainage coming from his right ear. One look and I knew it was an ear infection. So off to the Pediatrician's office we went and we were promptly seen and given the usual prescription of Omnicef. Six days later there was still a lot of drainage. The ENT prescribed antibiotic drops and said that if in a few days things weren't significantly better (i.e. no drainage) to call back. Well, wouldn't you know it a few days later his ear was still as ugly as it was the first day we went to the Pediatrician's. A call to the ENT produced an appointment so he could take a look himself at the offending ear. Once in the office, Dr. Tunkel (ENT) took a very brief look and declared that it is really nasty and needs to be cultured. Three days after that fun filled event, the cultures were back. Jack has a Methicillin-Resistant Staphylococcus Aureus (MRSA) ear infection. We've been twice to the ENT for "clean out and lube up" (he suctions out the fluid from his ear and puts some very potent anitbiotic ointment in his ear), he has started yet another round of oral anitbiotics, and another round of anitbiotic drops (both he will remain on for 2 weeks).

As if that wasn't enough, he has developed a nasty cough and has started really wheezing. So yesterday we paid another visit to our dear Pediatrician's office, during which we reluctantly decided to put him back on another round of steroids. His wheezing and coughing are unbearable to listen to so we're to give him some relief via meds. And we are doing nebs every four hours (or less when needed) to help keep him out of Hotel Hopkins. It has been a while since our last inpatient visit and frankly, we'd like to keep it that way.

So while we've not updated our little blog for quite sometime, it seems that not too much has changed...

Sorry for the late late notice....

But its been a bit of a week. Tomorrow Jackson goes in for new PE tubes (aka tubes in the ears), a partial adenoidectomy, and an Auditory Brainstem Response test. It is the latter of the three that has me concerned. But we'll wait and see (as usual) - its amazing that the medical field hasn't come up with a latin phrase for that....hmm let's see....exspecto aspicio. That sounds about right. Wait. See.

We'll let you know tomorrow how things go.

A checkup a day....

This week is a particularly active week for us, medically speaking. Jackson had a well visit (aka check up) with his Pediatrician this morning, tomorrow he is scheduled for another modified barium swallow study, and Wednesday we see the Pediatric Pulmonologist.

This morning the visit to the Pediatrician's office was pretty uneventful. Checking all the major systems, reviewing meds and therapy schedules, and talking about all the various developmental milestones. Jackson has again thrown us a curveball. That wacky boy had an ear infection in his right ear last week, hence the current round of Augmentin. It was such a nasty infection that the Pediatrician couldn't see very much at all and we were uncertain if his tube was still in place in that ear. The left ear however, looked clear, complete with tube. Today, the right ear was clear so that Dr. M could see quite well and noted that the tube was in place. The left ear however, while not infected, is now without a tube. Craziness! The ear with the tube got infected while the ear with no tube remained clear. Completely contrary to how it is supposed to work, but hey, this is Jackson we're talking about here.

So we'll leave the mystery alone in hopes we avoid any more ear infections. Should another pop up, we're back to the ENT to have another set of tubes put in and maybe some extra anatomy (adenoids / tonsils) removed.

Tubes don't fail me now!

When Jackson awoke yesterday, cranky, feverish and out of sorts I suspected our old enemy the ear infection had returned. A visit to one of our favorite pediatrician's office yielded the answer I already knew; a raging infection in his right ear. I wasn't surprised in the least, since during the last couple of visits to check his ears it was noted that the tube in his right ear was "moving". I think it has officially moved out. The complicated part of this, because there has to be one, is that if we start having multiple ear infections again that means potentially more delays with his language. So we really can't afford to wait to start talking about putting new tubes in. So while we wait for the Augmentin to kick in I'll be putting a call into our ENT at Hopkins to schedule a follow up.

In the meanwhile, his congestion has moved from his head to his chest so our focus must shift a bit. We've fired up the nebulizer in hopes that we can avoid another round of steroids. Stay tuned campers...

A pox upon our house....

Back in the dark dark ages, when someone didn't like you very much (i.e. hated your guts) they would often wish "a pox upon your house". In those days a pox of any kind was enough to send people running and encourage the body collector to pay a visit. ("Bring out your dead....") Now, most people don't even know what a pox is.

You may remember a few months ago, Ainsley woke up one morning with a few suspicious looking spots on her face and belly. We were at the time, very concerned about Jackson's exposure and whether or not he would get it too. We were due to go on vacation and it was suggested that we think seriously about canceling our trip, just in case. There were many phone calls to hospitals and doctors abroad to inquire if they were equipped with the antibodies Jack would need should he develop a case of he chicken pox. It was really a big deal.

So you can imagine my concern when I discovered, while changing Jackson's diaper this morning, a few pox of questionable nature on his belly and face. A call to the pediatrician produces a "not-so-concerned-about-it-now" response, by which I was fairly surprised. But it seems there's no need to rush off to Hopkins quite yet. It is again the wait and see treatment (always my favorite). With any luck he'll only have a few spots which will come and go with little fanfare. There is, however, another factor to the timing of this. Jackson is already battling another nasty cold. (Surprise surprise.) Chicken pox has been known to cause pneumonia in kids whose immune and respiratory systems are already under attack. So while the pox themselves aren't much of an issue, the respiratory complications that can arise from the virus could be really nasty.

So we'll wait. Wait for the cold and the pox to run their course and hope their paths don't meet.

Thick-It!

It is about the most unappealing name for a product I think I've ever heard, but that is what it is called. Ironically enough, that is exactly what it does. Since we suspect Jackson is aspirating thin liquids we've been advised to thicken everything. Milk, water, juice. It can all be brought to a nectar like consistency with 2 tablespoons (per 4 ounces) of, yes you guessed it, Thick-it. This stuff is really just modified cornstarch so it doesn't change the taste of the beverage of the moment at all. (And yes I did try it myself to make sure.) And so far, so good. Jack doesn't seem notice the consistency change, and I am thrilled with that.

I wasn't expecting a huge change with this modification. But remarkably enough, he is sputtering less, and not junky at all after drinking a few ounces. I am really surprised. I don't know what this means for the long run, but for now I'll settle for the fact that this will help keep him healthy and off of steroids!

Mmmm...Mmmmm.......Barium

Since the beginning of November, Jackson has battled several colds. Three of which have landed him back on the usual dose of Prednisone. After leaving the pediatrician's office with the third prescription in hand, I started thinking. (Yeah, I know, watch out.) Why is he suddenly having such a hard time now? We were doing so well.

So it occurred to me...
A little over a month ago, we were playing in our family room after dinner one evening when I heard Jackson burp. I was mildly alarmed, but remembered the surgeons saying that over time the Nissen would loosen.
On the 14th of December, Jackson was sent home (along with just about every other kid in his daycare) with a nasty GI bug. And while it was mostly diarrhea, around 3am that night I awakened by the sound of sputtering and coughing and went to his room to find he was vomiting, or at least attempting to. While only a small amount came up (I was able to plug his extension tube into his G-tube which helped!) I am almost certain that he did aspirate some. A few days later we were in the Pediatrician's office with a nasty cough (croup) for which she prescribed a three day course of steroids. And while he did have some improvement with that treatment, a week to the day we were back in her office for a different kind of nasty cough, mild retractions and wheezing. Another five day course of steroids followed. He improved and for a day or so his cough disappeared. It is however back again.

So it would seem that our little Man is aspirating again. Why now, you ask? Well two reasons come to mind: The first is that last winter he wasn't allowed any liquids, now he drinks apple juice, water and milk like a champ, and is apparently aspirating just enough to aggravate his little lungs (like they need it!). Secondly, it seems his Nissen is loosening. Something that may or may not be easily dealt with. If we can start reflux meds and prevent anything from unnecessarily traveling back up his esophogaus that would help. So it seems we are headed back to Hopkins for yet another Modified Barium Swallow Study and a Barium GI Study.

He is however making great strides with his communication. While he is still not "talking", his dign language has improved and increased in frequency. So we are big on the signs. One of my New Year's resolutions is to teach him one sign a day. That may be an enormous stretch but we'll give it the old college try.....