Boy, am I getting to know the GPS lady. Eliana and I have made two 45-minute trips this month to a therapeutic facility where she’s now getting feeding therapy.
If you’ve been following this blog and her health story, you know about the feeding problems kids with kidney disease and feeding tubes have. Surprisingly, support to help parents of kids who, like Eliana, are dependent on the feeding tube and don’t just figure it out and start eating by mouth on their own is hard to come by.
Especially after age 3, when a child no longer gets early intervention, good help for treating these sticky feeding problems is hard to find. This has been one of the hardest things for me to wrap my mind around because while most kids have mastered feeding by age 3, even most kids who were eligible for early intervention, those who haven’t really do need help in order to reach their potential and hopefully catch up to their peers. But instead there’s a question about whether the intermediate unit, or the school district, should bear any responsibility, or it should be addressed medically, the argument being eating is not an educational requirement. The counter argument is that a child needs to eat and drink while at school, especially once they’re in a full-day program, and it’s costly and potentially disruptive to have an aide or nurse administer tube feeds. I’m still trying to figure it all out.
Most parents address the problem by getting their child in a feeding clinic, either an inpatient or outpatient program at a hospital or therapeutic facility. Eliana finally got in one of these programs after about a three-month wait, and so far it seems awesome. The worst part is the 45-minute commute, but that’s made better because she’s OK with it and is making friends with the GPS lady.
“Take exit 43,” the GPS lady says.
“Exit 43, OK,” pipes up a little voice from the back seat.
“Stay on rt. 22 for 3 miles.”
“Three miles, sure,” repeats Eliana.
It’s actually pretty helpful for those times I want to ask the gps lady to repeat herself. So rather than me muttering to myself about the other bad drivers, I’m now joining in on the conversation in the car.
“Continue on 83 for 12 miles.”
“Yes, ma’am,” I say.
“Yes, ma’am,” says my backseat driver.
Not only is it entertaining and helpful, I’m chalking it up as speech therapy too.
It’s been almost exactly two months since our last post. Sorry. But it’s been a whirlwind summer, with things changing left and right. Here’s a rundown of the highlights over the past few months, with Eliana’s comments, and a nice “what I did on my summer vacation” collage at the end:
(1) We took trips!
We braved two day trips to amusement parks. Sesame Place early in the summer, then Knoebel’s in August. Two looooooong days, but fun. Eliana is now particularly fond of carousels, and in case you’re wondering, most of the rides are easily described as “up down” or “round and round.” But really…do you need to know much more about the kiddie rides? There was also a trip to the annual Fisher Family Frolic in Vineland. The world will never forget that ‘cow lick Ana’s arm!’ and ‘Ana pat bunny!’
(2) Swimming is totally a thing now
Shira’s been a waterbug for years, and there was no slowing her down this year. Eliana went from a reluctant floater in June to an “I did it! Kick!” independent kicker in August. I smell a wintertime rehab possibility…
(3) The NICU reunion
Every 3 years, the Hershey Medical Center NICU hosts a “reunion” for families. We first attended in 2013 while Eliana was still in the hospital (we called it a “pre-union” at the time), so this was the first time Eliana could attend. The weather was kind of miserable – 90+ degrees and humid in September – but it was still awesome to be there. Weirdest thing was looking around at all the families with really young kids and remembering what it must be like to be fresh off the experience.
Plus…they had pony rides! “Ana ride horse!”
(4) School daze
Of course there’s the elephant in the (class)room – school has started. Shira is a (gasp!) middle school student this year. Among other big changes, it means her bus stop is 85 minutes earlier (hello 6:55 am!), and two blocks further. ugh. Daddy no like.
And Eliana is in school too. Now that she’s three years old she has transitioned into the Intermediate Unit for her services, and she is attending preschool in a three-day-a-week IU classroom in Hershey. That’s about 30 minutes away – not far from the medical center, ironically enough – so HER ‘bus’ (ok…its a van, but that’s not what she calls it) picks her up at about 7:30 to whisk her off to school. They’re apparently working on the days of the week, so “Ana go school Monday” is the refrain, every day of the week.
(click on the photos for a slideshow)
Date: Saturday, July 16; 2016
Time: 7:30 am
Setting: Lerner household; Master bedroom; Daddy’s side of bed
Eliana <cheerfully and with excitement>: “Daddy! Out of bed Daddy!”
Daddy: <who had heard her coming and had a chance to clear his throat in order to sing>:
“Happy Birthday to youuuu!
Happy Birthday to youuuu!
Happy Birthday Eliaaaaaaannnnnnaaaa!
Happy Birthday to youuuu!”
Eliana <smiling broadly and holding up several fingers>: “Fhee!” (See here for alternate pronounciation)
Eliana gets mounds of mail for an almost three year old–some of it addressed to her, not her parents or guardians, which still throws me off because isn’t it illegal to open someone else’s mail?–most of it mind-numbing insurance and medical papers, but occasionally something insightful, like the copy of the report that came in the mail recently from her evaluation for services through the intermediate unit.
The county intermediate unit (IU) is the next step after early intervention, the in-home birth-to-three program for kids with developmental delays and disabilities. Next month Eliana will reach the ripe old age of three and graduate from early intervention. Unfortunately, there’s no ceremony with little caps and gowns, and she doesn’t get to march down the aisle to Pomp and Circumstance and get a tiny diploma. Worse yet, there’s no not graduating, since it’s based on age, not meeting educational requirements, so while her therapists would love to keep working with her, she’s aging out.
The IU therapist who evaluated her wrote in the report that Eliana was “intermittently intelligible to this novel listener.” While I was amused by the typo saying that Eliana ate cheetahs, imagining her on a big-game hunt in Africa rather than crunching Cheez-Its on the couch, Hank latched on to “intermittently intelligible,” and it’s become our new catch phrase. I mean, aren’t we all at best only intermittently intelligible? I even suggested we consider renaming the blog.
This week I came across a therapy facility in a magazine and called to see if Eliana could get in there. I had a long conversation with the woman who answered the phone, and one of her questions was what’s Eliana’s diagnosis. I rattled off the name of her syndrome, mentioned heart defects and scoliosis, and by the time I got to the fourth diagnosis I paused, said, “Uhhh…” and started laughing at myself for being intermittently intelligible.
Communicating is actually really hard sometimes when you’re a special needs parent. You never know what the other person knows. I belong to an online group of moms whose children have heart defects, many of them much more serious than Eliana’s, and half the time I don’t understand the posts, between the acronyms for diagnoses she doesn’t have and the different procedures and treatments. Even among a group of peers, we’re only intermittently intelligible.
Back on the phone, I immediately regretted laughing and hoped the woman understood I was laughing at my own faulty speech, not the long list of diagnoses. Thank goodness the person on the other end of the line happened to be another special needs mom who simply said she’d love to give Eliana a hug. Guess I got my point across.
Little-known Father’s Day fact: in order to be a father, you first need to have kids.
So in honor of Father’s Day this year I want to talk a bit about Shira, who first got me into this whole fatherhood thing 11 years ago. She keeps growing up – as kids tend to do – but for some reason things seem to have sped up these last few weeks.
It all started for me at a Daddy/Daughter dinner in McDonald’s a few weeks ago (don’t judge – my first “date” with Amy included dinner at Wendy’s). Maybe it was when she ordered the 6 nugget kid’s meal, or how she confidently told me where we were going to sit instead of letting me pick. But whatever it was, instead of eating with my kid it somehow felt like I was eating with an actual person who just happened to be my kid.
Fast forward to her gymnastics show. This year she decided to move to “urban gymnastics” – climbing walls, jumping over stuff, and all that. Think a very light version of American Ninja Warrior. It’s a “coed” class…by which I mean it’s a half-dozen boys plus Shira, and sometimes that wasn’t easy. But during the classes and then at the show you could tell that she was really focused on doing well and enjoying herself. Y’know – actually listening to the instructor and trying to improve instead of just throwing herself at a wall. Quietly, and without making a big deal of it, she kicked those boys’ butts on most of the exercises. Think the crowd may have noticed, too.
Then her recent piano recital, where she showed such poise in her awesome performance. The last two years with her prior teacher the recital was done on a small upright in a church basement. This year she played a baby grand raised up in the center of a large sanctuary, complete with lights and microphones. Others might have been nervous, but she totally crushed it.
Yeah she did.
Watching her practice and then play the recital pieces you could see all the details coming through – adjusting hand positions, working the pedals, powering through any little mistakes. Somewhere in there she transitioned from “I take piano lessons” to “I play the piano.”
Then in just the last week or so it feels like she’s grown so much as a big sister to Eliana (I had to mention her once, OK?). No doubt that’s been hard with the way things have been for the past 3 years, but evidence suggests she’s got it down pat. Riding the rides with her at Sesame Place, exploring Hershey Gardens, helping her float in Grandpa John’s pool – even just picking up the slack when Amy and I want to wring Eliana’s cute little neck – she’s definitely hitting her stride there too.
So with all that let me just say “Happy Father’s Day, Shira. I couldn’t have done it without you.”
Because of an organ donor, Eliana can giggle with her sister under the covers.
Because of an organ donor, Eliana is learning to ride a tricycle.
Because of an organ donor, Eliana is.
This was Eliana one year ago this morning waiting for surgery to get her new kidney.
And Eliana running around today at Wildwood Lake.