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.