Monday…Daniel

Daniel is seven.  He asks a million questions a day and he usually knows the answer to them before he ever asks.  He is quite possibly the favorite sibling, as everyone fights to get to sit by him.  Seriously, tears have been shed and timers have been set all because not everyone can sit by Daniel at the same time.  He has blue eyes and two loose teeth.  He wears brown plastic framed glasses and takes very good care of them.  So good, in fact, we might get a wire framed pair next time.  He is seven and size 5 pants fall off of his waist unless I tighten them up for him.  He will eat two sloppy joes and ask for more.  He would love to play the iPad all day long.  Or maybe play outside.  And he definitely wants to sit by you and ask you about your car.

He didn’t walk independently until he was over 4 1/2 years old.

He didn’t eat solid foods until he was almost 5 years old.

His early medical issues are likely the reason I get to raise my Fab Five.

I haven’t shared a lot about my kids’ lives before they were in our family.  We know quite a bit of information, but we will never know it all.  We do know that our children’s biological parents had 5 children in 2 years.  Stop and ponder that for a moment.  Twins born in January 2007, twins born in January 2008 (3 weeks before their older brother and sister turned 1) and one more baby boy born in February 2009.  That’s a lot of babies in short amount of time.  That would be a lot for anyone, even with the best abilities imaginable and the most fabulous support system…and we know their biological parents did not have those things in place.

Additionally, Daniel had medical issues as an infant which required a tracheotomy and a feeding tube.  He had multiple surgeries and medical procedures performed during the first 3 years of his life and spent nearly all of that time in a special residential medical center for children.  Fortunately, he received excellent medical care and no longer needed his trach by age 3. He was then placed in a specialized foster home, licensed to care for children with medical challenges.  Unfortunately, he remained separated from all of his siblings because they didn’t qualify for this type of foster home.  Because of a diligent foster mom, by age 4 he was eating orally, although everything had to be pureed. Daniel moved in with us at the end of July 2011 and by September he was eating solid foods.  He had just begun to take independent steps when we met him in June 2011, but after a few more weeks of practice and building confidence he was walking around everywhere.

I asked a few people (including his physical therapist from the medical center) about the reason for his gross motor delay, but there didn’t seem to be a definitive answer.  Our best guess was that due to his other medical needs and vast amount of surgeries and procedures (more than 30 by age 3) he simply was delayed in developing some skills.

In December 2011, while I was out running errands with his twin sister, Daniel had a seizure.  Rob called me, then called 911.  I rushed home to find my son chatting in the back of an ambulance with the paramedics.  He had recovered from his seizure, but we drove him to the hospital as a precaution.  On the way, I called his former foster mom to make sure I hadn’t missed out on a little detail telling us that he had a seizure disorder.  Nope, no history of seizures…this was the first one.

Initial imaging showed abnormalities in Daniel’s brain, so he was admitted for further testing.  A long term (24 hour?) EEG and MRI were done. We were sent home a couple of days later with daily seizure meds, emergency seizure meds (to be administered if he had 3 within an hour or a seizure lasting more than 5 minutes) and a referral to see a pediatric neurologist.  Oh, and more information about brain abnormalities. I’ll save all of the medical info for another day…or seriously, I’d never get to Tuesday. : )

Quick version and update on the seizures…we like our neurologist a lot and appreciate that he wants our input regarding treatment.  After 6 months of no additional seizure activity, we decided to taper him off of his daily meds.  After 6 more months of no medicine and no seizures, he had another seizure almost a year to the day from when he had his first seizure.  This second one happened while we were at church, seemed to last quite a while and upon advice from a fellow church member and medical professional…we called 911 from the church and Daniel and I chatted it up in the back of the ambulance on the way to the hospital.  Everything checked out pretty easily at the hospital, they consulted with his neurologist who put him back on daily meds.  We followed up a few weeks later and continue to be seen every 6 months or so. We have seen two additional seizures since then, including one that lasted longer than 5 minutes and I had to administer medication to stop it.  Thankfully we were home, and thankfully two big brothers were here to help out…especially because one little brother was vomiting at the same time the seizure was occurring.  Never a dull moment I tell you.  Never.

Ok…so enough about medical junk. Other than to say that I don’t know if anybody would have been keeping a close eye on our 5 little ones, if it weren’t for Daniel’s medical issues.  State workers became involved when there was concern about his parents’ ability to adequately care for his medical needs…which eventually led him to be removed from the home and placed in the medical center.  Subsequently, his siblings were removed from the home, placed in foster care and eventually all 5 were eligible for adoption.  (That’s when we came into the picture!)  I hate it that Daniel basically spent his first three years of life in a hospital, but I am thankful that he spent the next 18 months in a good foster home and wasn’t bounced around a lot.  His transition into our family was a little rough since he had been in the same placement for so long.  However, he was also very glad to be with his siblings again.  Can you even imagine how hard that is for a 4 year old to deal with?  He still talks about his foster mom on occasion.  She and her two daughters came to visit us once and that was good for everyone.  We keep in touch occasionally and I will always be grateful for how she cared for and loved my Daniel.  I know it was not easy for her when he left, but I so admire someone willing to risk heartache for the sake of providing a temporary, loving home for a child.

Enough of the heavy stuff…my boy!

He loves to play and he loves people.  He has a remarkable memory for people and places.  He cares about others and is everyone’s friend.  Sometimes he laughs at the wrong time, and sometimes he laughs so much he can’t stop.  When he tries to smile for a picture, he scrunches up his eyes too much…and his beautiful eyes twinkle when he doesn’t try at all.  I’ve seen him learn to walk confidently up and down stairs.  He never tells me he doesn’t like his food…even when I know he doesn’t.  He loves his big brothers and his little brothers and sister, and especially his Desirae.  He never falls asleep in the car and when he has to stay awake all night for a sleep deprived EEG, it’s no problem…he’s gonna be the best guy to have at slumber parties!  He’s a handsome boy who loves me fully and forgives me easily when I mess up.

He is brave and he is loved.

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3 thoughts on “Monday…Daniel

  1. Pingback: my rainbow | worth the wait

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