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.
Tuesday, March 11, 2008
Monday, January 28, 2008
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.
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.
Tuesday, January 22, 2008
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...
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...
Sunday, January 20, 2008
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.
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.
Monday, January 14, 2008
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!
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!
Tuesday, January 8, 2008
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.....
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.....
Wednesday, December 19, 2007
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.
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.
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