Our Journey Continues July 4th, 2009

July 4th, 2009 came along…the kids are 6 years old. Ian started off the beginning of July with an ear infection, his balance gets off, he does not eat; ear infections have always hit right where it counts…balance and weight. Both have always been a struggle with Ian so when we start to see this happening, the doctor gets a call right away. Ian was on antibiotics for 2 or 3 days, in the beginning of the medicine cycle he seemed to be getting better, then on day 3 he came home from camp and was all over the place. He could not hold himself up in a sitting position at the table, could not stand with or without his shoes and braces, could not bring a cup to his mouth to take a drink…those are just a few things…basically he could do nothing. I called the ENT, who informed me if Ian was not acting like himself I should go to the ER…well it did not take me long to get everything together and head out for GBMC pediatric ER. Brian stayed home with Becca and my parents met me at the ER. The doctor took a look in Ian’s ears and said that the medicine was working, it did not look like he had an ear infection…well that just did not sit right with me…why was Ian having all these other issues. I was expecting to go to the ER, the doctor to look in his ears and the antibiotic to be changed and then go home. Well that did not happen instead the ER doctors seemed a little bit confused as to what was going on. They ran blood and urine…everything was negative. They called the neurologists at Johns Hopkins Hospital since that is where Ian’s neuro-genetics is. The on-call neurologists wanted to have a head MRI completed; Ian would need to be put to sleep. GBMC did not have the staff to do this; they did not have a pediatric anesthesiologist…so we had to wait to be transferred to Hopkins. By the time everything was in order, we could not be transferred to Hopkins, since Ian needed to be put to sleep he would have to be admitted to the PICU; Hopkins no longer had any PICU beds available. GMBC began making other calls looking for a bed; they hit a home run with Sinai’s PICU. However, we were now late into the night…I would say easily after midnight, it was decided Ian and I would sleep in the ER and be transferred in the morning. So my parents went home, Brian was getting all of this information over the phone and was making plans for Becca for the next day so he could meet us at Sinai in the morning. I don’t know what time we finally got to Sinai in the morning or how much sleep Ian or I got but we eventually got there, got admitted to the PICU and the wait began for the MRI. I don’t remember the order everything happened in but over the next 3 days the following took place: MRI of head and spine, EEG; numerous blood and urine tests, and IV antibiotic as it turned out Ian did have an ear infection. He was off of the antibiotic for a little bit due to being in the ER, all it needed as that time frame to show its ugly head. Ian was give a high does of IV antibiotic and we moved onto everything else. All of the other tests came back negative. At this point, Ian was starting to make some progress for the better, he was getting some of his balance back, able to hold a cup…pretty much slowly getting his motor skills back. So Ian was discharged from the hospital with the diagnosis of ataxia (according to wikipedia.org is a neurological sign and symptom that consists of gross lack of coordination of muscle movements). Brian and I believed there was more going on then just ataxia, however since all of his tests came back negative, we had nothing else to go on unless he had another episode. Ian never regained all of his strength back. Before this episode he was approximately 80% independent. After the episode, he was unable to walk up and down steps on his own; he would sit and slide down then but would not walk or crawl up them at all. He finished out the summer at camp and we got him ready for school.