Well, after 6 months from his initial consult, we have survived his 2-day evaluation and I sat down with the Eval Team for some answers - and direction on our next steps. I love my children, I want to parent each of them in the way that is best for that child. There is not a one-size-fits-all parenting tactic for our family. And with Dean, I needed answers.
My pregnancy with him was, as always, full of complications. Hyperemesis (translation: super vomit)
plagued the first half, bedrest began at only 17 weeks. I had a subchorionic hemorrhage and although this is not always an issue, as it can heal, this pregnancy it WAS a problem. The hole in the placenta was growing and reducing nutrition to the baby.
I was given P17 injections weekly (in the bum), spent ALL my time in a recliner, attempting to work from home with a laptop and a cell phone, going in for twice-weekly ultrasounds and snagging a shower every 3-4 days. It was certainly tough, with one kid in elementary school and one in a special ed preschool (this was just before we began our homeschool journey), and both Dan and I working full time.
Steroid shots for his lungs were given as well as many rounds of terbutaline to stall preterm labor. It all paid off and my water broke 4 am on Day 1 of Week 37! Not a preemie!! Due to meconium in my water, he was briefly in the ICU, but was able to come home when I was discharged - the first time ever!
This was a time in our lives when we really learned what relying fully, completely, whole-heartedly on Christ every single moment of each day. I remember making it to 24 weeks and dropping to my knees in prayer (not easy when pregnant and haven't moved your body much in 2 months) and breaking down in tears. Lord, this child can now live outside the womb, if needed, if this hole grows too large. Lord, with You, nothing is impossible. I would have not had the strength to survive this pregnancy without a daily reliance on God. I know He drew us closer to Him in this time.
Many blessings came from this pregnancy, aside from the actual baby. I made new friends thanks to a group of church people that brought us meals and helped with cleaning/laundry. I discovered we could in fact survive on 1 income if we had to, if we gave it to God, if it is His will. And that also led to giving homeschooling a try. Looking back, I am intensely grateful for every complication of that pregnancy.
From Day One there have been a few signs, a few health issues, that signal another busy and long road ahead for this child, just as his sisters before him. About 12 hours after birth he began to have seizure-like episodes of shaking, crying, contorting his body. We couldn't tell if he was awake or asleep during these. He spent a day and a night in the NICU and was discharged with the diagnosis of a withdrawal from a medication I was taking during pregnancy.
This night-seizures (I thought they were night terrors, that is what we usually call them) type episodes continued - 5 years later they are still happening. Often. He will blank out and rub his hands and scream. He will wake up but continue to cry and shake. He will be asleep and they'd last for half an hour. Since this is not what seizures look like, and the pediatrician didn't seem concerned when he was about a year, I let it go. In my defense, we have SO SO many other health issues going on. I've been in survival mode for a good 6 years now.
(By the way, this boy is a delightful addition to our family. He's entertaining, loving, and always laughing. So. Much. Fun!)
Desperate for answers the Gastroenterologist opted to put him under and perform an endoscopy and biopsy. I remember how tough it was to physically (well, and emotionally) bring him to the surgery and be there with him because I was pregnant with Bentlee and had severe "morning sickness."
A few hours after my daughter Bentlee was stillborn I got a call from the GI doctor. I was still in the delivery room. The diagnosis was Eosinophilic Esophagitis - bleeding throat. The next year involved allergy testing (nothing concrete was found, but that's not surprising, as he was only 18 months old), forcing him to drink Pulmocort with maple syrup, and many, many weight checks.
Thanks to our experience with the girls (Julia and Taylor were BOTH diagnosed with Autism and ADHD, etc. at the same time, at ages 6 and 3) we noticed some things of concern in Dean. I mentioned them to our parent ed teacher in our awesome ECFE toddler class and promptly scheduled an assessment with Help Me Grow - early childhood special ed. The very same preschool Taylor went to.
He had a diagnosis of multiple developmental delays and significant speech delays. At only 2 years old the speech class was pretty low-key. An hour a week, with mom, in a class with a special ed teacher and only a few other children. He also began private speech through our medical clinic, but our health insurance would not cover the visits - speech therapy (even now, I just checked this week) is only a covered service if born with a physical mouth deformity.
I was SO thrilled, when a couple months into his 4-day-a-week preschool, at almost 4 years old, he actually began to speak! He could say 2 or 3 words together on occasion, but mostly did not speak. This caused him so much frustration, to not be understood, and so many meltdowns and physical anger and aggressiveness. His speech is hard to understand but at least he was speaking!!
This kid is brilliantly destructive, delightfully entertaining, clever, active, loveable, and frustrating all at once. He requires CONSTANT supervision - or else! He runs out of school - the teachers have no idea he is in the parking lot, away from church (hiding in a 2nd church building, playing at the park nearby, or all the way across a busy street by the pond!!), and walks right out of our house, despite locked doors.
He always keeps us entertained (check out any post titled "Deanism") and on our toes. And his "squeeze hugs," as he calls them, could melt a snowman's heart.
All the other little boys at Papa's softball game played catch or colored quietly. Not Dean, that wet sand was calling his name. He was so full of mud his pants fell right off (since he's so skinny).