The Journey We Are On.....

The last week and a half have been stressful for us, filled with seizures, sickness, and doctor appointments. Wednesday, February 10th -- Ethan woke up crying and seizing. Jeff had not yet left for work so he helped me administer Ethan's rescue medication when the seizure clusters continued for more than five minutes. The diazepam worked, but it took about 8 minutes for the seizures to stop and for Ethan to fall asleep (a side effect of the medication). After we were sure that Ethan was safe Jeff went ahead and went to work. Ethan slept for a little bit and then was up and about playing, but was still pretty tired and not seeming to be 100% back to his normal. I called the pediatrician, to let her know that we had to use the diazepam and to see if we could bring Ethan in to make sure nothing else was going on. There weren't any appointments available for that day with our pediatrician, and while we could have seen another doctor in the practice, I decided it would be bette...

PBD-ZSD affects every child differently. In the first year of Ethan's life, when he was meeting a few of his gross milestones not all that far behind schedule we hoped and prayed that Ethan would end up developing the skills and abilities that would put him on the milder end of the spectrum of the disease. However, as he continued to fall further and further behind, develop additional health challenges, and faced multiple setbacks it became clear that Ethan's symptoms (or ability level) place him somewhere closer to the middle of the spectrum of severity for PBD-ZSD. Ethan will be 6 in July and while we are thrilled to say that Ethan can walk short distances independently, his balance and endurance continue to be a major issue. Since the return of the seizures late this past Fall, we have been fighting hard to keep the mobility that he has fought so hard to achieve.  One of the things that Ethan has been working on for months, both at school and at outpatient PT is ridi...

The end of January and the beginning of February have been marked by time with family, several doctor appointments and unfortunately more seizures. January 18th  It was Martin Luther King Jr. Day so Ethan didn't have school and Jeff had the day off from work. We spent the day as a family, and in the evening Ethan had a seizure that woke him from his sleep before we had transferred him to his bed.  January 20th We took Ethan to the dentist for his regularly scheduled cleaning. Ethan won't let us in his mouth to brush, so we have his teeth cleaned every 3 months instead of every six. As you might imagine, Ethan does not enjoy having his teeth cleaned. Jeff goes with us and sits in the chair with Ethan and I help hold him down/still while the dental hygienists work on our little guy. Thankfully, they are very good with him and let us dictate when Ethan needs a break. Ethan's dentist has shared with us that she has a brother (who is in his 30s now) with special need...