A weekend away....

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

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

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

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

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

My Cup Runneth Over....

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

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

glug glug - 1/4 of the cup is filled

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

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

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

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

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


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

So let's catch up...

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

Since February 2006 Jack has been hospitalized twelve times.

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

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

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

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

MRIs, Cat Scans, EEGs and a Spinal Tap.

Scores of doctors, most of which have been extraordinary.

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

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