A lot has happened since our hospital stay.  While in the hospital, I requested a Rx of Zantac for acid reflux hoping this would help with the screaming that seems to follow every feeding.   A week later it was still getting worse, he was now crying and arching his back up to 2 hours after eating.  On May 27th at 8:30 p.m. Jaron had his first seizure.  Brian was at work and since the neurologist had told me that a seizure lasting less than 5 minutes was not an emergency, I just sat and watched him.  But at 9:30 it happened again.  I called Christy and she came over to make sure everything was ok.  We looked up some info about seizures and we talked until Brian came home.  I had been thinking about trying soy formula to see if it would resolve Jaron's belly pain.  Brian brought home some formula to try that night.  By the second feeding he was like a totally different baby!  I was so excited!  He actually let Haylee and Hannah hold him for about 20 minutes each!  Usually he is arching and crying whenever he is being held.  I called the neurologist the next morning and explained the spells he'd had the night before.  She confirmed that they were seizures and prescribed a medication over the phone.  I knew better than to call the pediatrician this time since they would have insisted I go to the ER for a possible seizure.

This week we saw the Developmental Pediatrician, Dietician, Physical Therapist (3-in-1 appointment) and the Geneticist.  We discussed Jaron's hearing and follow-up with an ear specialist since his ear canals are so tiny and he needs hearing aids.  I talked to the Dev. Pediatrician about our traumatic ER experience and asked for ideas to avoid another episode like it.  According to the geneticist and all the info about MDS, we will be dealing with pneumonia quite a bit.  She recommended we see a pulmonary specialist at Legacy who can assess Jaron's specific needs for airway support etc.  Her idea was to have him make a list of all the requirements so that we can take it along to our next ER visit.  Hopefully a letter from a Dr. would be better received than our "parental opinion."

I asked if we needed to be extra careful about Jaron's exposure to illness. The geneticist said that Jaron has a normal healthy immune system but he is physically less able to fight illness when he gets it.  Hence, an episode with a virus and possible pneumonia turned into 3 days in Intensive Care.  We have 3 active children who love their baby brother and we don't want to create a bubble and quarantine Jaron from his family and all the love.  So we just have to try to be careful to avoid obvious exposure, wash hands, and keep from kissing or touching Jaron's face.  The girl's are great at only kissing him on top of his head!