finn's ear tube surgery is still on for tomorrow, despite hurricane sandy's best efforts to screw things up!
we are really excited to get it behind us!
it was definitely nerve wracking going into surgery with finn last december, when he was only 9 months old, to have his ear tubes put in. but the surgery only lasted a few minutes- it's so quick! and he did great.
this go round, things are going to be a little more complicated. finn has to have an auditory brain stem hearing test while he's under anesthesia. this will tell us how his brain is translating sound. it was recommended by his doctors since his hearing tests have been so inconclusive. the hearing test itself is non-invasive and doesn't carry any risks, it's just that finn has to be completely still during it, and that's why they wanted to do it after he is already asleep for his ear tubes.
...the only thing is, the hearing test takes two hours.
a lot longer than the five minutes the ear tube surgery takes. so he's going to be under anesthesia for a significantly longer period of time than before. this means he has a greater risk of being sick to his stomach when he wakes up (and we have a greater risk of being sick to our stomachs while he's asleep! ahhh the nerves!)
so tomorrow morning he will enjoy a heaping breakfast of jello and water, and then we'll head to the hospital. we are praying for an easy and successful surgery day with no surprises! we appreciate your thoughts and prayers (and my favorite positive hippie vibes of course!)
we'll let you know how he does! here's some fun hurricane sandy pictures in the meantime! :)
this morning was finn's pre-op appointment at dupont hospital to give him the go ahead for his ear tube surgery next week. it's a lot of poking and prodding and doctors office-y type stuff, and frankly, after the big tiring day of poking and prodding we had yesterday, both of us were pretty over it.
finn was not happy to be there, and he was even less happy about the hour drive in our new-to-us car that doesn't currently have a dvd player (first world problem, kid.) it took all of my mommy tricks to get him through the appointment, and most of those involve singing and making goofy gestures in public. i no longer have any shame.
even though it was quite the mental and physical workout, going to dupont today was the perfect thing for me to do after finn's big evaluation day yesterday. whenever i go into a children's hospital, i am greeted with the overwhelming reminder that we are so blessed, and so lucky, and that finn's challenges are so miniscule in comparison to what some of these other kids face every single day. just in case i was thinking about having a pity party this afternoon, dupont went ahead and kicked me in the pants and told me to keep my chin up. will do.
the best part about our visit today, however, was not this great reminder of how blessed we are.
it was not the amazing staff of nurses who could somehow hear finn's heartbeat over my iphone blaring "the circle of life" (he hugged both of them so they were pretty much jelly in his hand).
it was the very short time we spent in the waiting room.
there were a couple of "normal" looking kids waiting, playing games on their ipad, a couple of really active toddlers, a couple of kids who had some obvious delays, and then one of the handsomest teenage boys i've ever seen. he was in one of those really intense looking wheelchairs with the head support and crazy mechanics, and he was non verbal. but you could tell by his eyes that he had this wonderful mind that was trapped in this frustratingly uncooperative body. my heart just breaks for kids like that, and there's so many of them at dupont.
i kind of took note of all of the kids in the room and then started to pry finn off of my neck to get him to play with some of the toys or interact with some of the toddlers.
as soon as i got him off, the handsome boy in the wheelchair let out this incredibly loud and awkward noise that, god bless him, sounded like he was trying so hard to just say "hi" but it came out more like "HAAARRRGGGGGHHHHHHHHUHHHH!"
every kid and parent in the waiting room jumped, and stared at him in complete horror, and then quickly turned their eyes, ashamed, back to what they were doing.
and then i looked at finn.
he was "drumming" on the seat of one of the waiting room chairs, looking at his hands, ignoring everyone else around him, but when he heard the boy make his attempt at a hello sound, i watched this beautiful smile spread across his sweet little face.
he was the only one in the room who's immediate and unfiltered reaction was one of joy and natural acceptance. he looked up from his hands, looked right at the boy in the wheelchair, gave him a big old grin, and waved to him.
and i thought the boy in the wheelchair's face was just going to split open because it brought a whole new meaning to the term "smiling from ear to ear."
it took everything i had left in me not to sob in the middle of the waiting room.
never, ever, have i ever been so proud.
a lot of people have reminded me lately that god doesn't give you more than you can handle.
and i love everyone who says that to me, because it's said out of nothing but love and encouragement.
but i kind of hate that saying in and of itself.
because i think a lot of times you do get a lot more than you can handle.
and i don't really think it's god that's dishing out this hard stuff and making you handle it.
but i do think that sometimes god gives you things like the waiting room this morning,
when you really need it.
so you can see that hidden in these challenges are the most perfect gifts.
* * * after i wrote this and re-read it, it reminded me of a blog my cousin-in-law posted earlier this year. i went back and found it and re-read it, and it's so so good. enjoy. http://www.littlemeems.com/2012/03/perspective.html
the post-evaluation meeting we had with the doctor and therapists went really well this afternoon. billy and i are both so very grateful for the team that we had. we feel like they really understood finn's strengths and weaknesses accurately and got to know him well in the short time they had with him. we are so beyond thankful for the early intervention program and the dedicated professionals that are really changing lives by working with families like us to give kids like finn the best tools to help them succeed. we couldn't be happier with how today went.
the developmental pediatrician started off the meeting by telling us how impressed she was with billy and i at identifying these early warning signs with finn when it's so easy to turn a blind eye with kids as young as he is. she said that since we have been so aggressive with getting finn access to every resource available to help him, that she thought we deserved the same from her. since finn is responding so well and really learning and growing in the early intervention program, she wanted him to have every opportunity that they had to give him.
there were a few tests and scoring systems that they used with finn today, and they were so kind as to not score him on tests like the A-DOS, which is designed for children 2 and up. we were so worried that they were going to score him on a test he was too young for and he would once again look "really bad on paper." that didn't happen. they noticed all of finn's awesome traits, including how laid back, content, and affectionate he is. but they also noticed his weaknesses- no imaginative play or imitation, and inconsistencies with eye contact and responding to his name.
in all of the tests that they scored finn on, including the DSM-4 and CARS, he ranked on the low end. he just met the criteria for an autism spectrum disorder, but he fell into the mild/moderately autistic category and not the severely autistic category.
freaking.
huge.
relief.
(not the bubble kid!!)
(i'm sooo terrible!)
so, officially, today finn was diagnosed with an autism spectrum disorder.
today.
not forever.
and if it's forever, that's okay too.
but we're not about labels around here.
we are about tomorrows.
and hope.
and freaking hard work.
the developmental pediatrician did not feel at this time, considering finn's young age, that she had enough evidence to diagnose him with a specific disorder, such as PDD-NOS. but by diagnosing him on the spectrum, she is opening the door for more intensive therapies. we have already added an occupational therapist through early intervention as of today, and will be looking at adding a behavioral specialist, mobile therapist, and therapeutic staff through a behavioral support service.
i literally don't know what any of those things mean yet, i just copied them off of her recommendation sheet.
the point is, she hooked us up.
instead of feeling overwhelmed like i thought i would, i really feel so encouraged and empowered. the people we met with today were right on the same page with me, and they just want to help finn succeed. we feel so supported.
they all just loved him so much, too.
you should have seen him popping his little head up over the conference room table this afternoon and making eyes at everybody like "aww shucks, are you guys talking about me?" and then burying his head in billy's lap. cutest thing ever.
the doctor is excited to see finn again in 6 months to see how he's doing.
we hope he walks in there and gives her a high five and a big "thank you!" :)
what a big day! i'm going to have a much deserved beer. or three.
thanks for checking in on us. all of your prayers, thoughts, positive hippie vibes, and words of encouragement really paid off! seriously, we feel the love!
xoxo
i mean, it's not a natural environment that they stick you in. we're locked in a room with an observation glass with a handful of toys and a few chairs. billy and i were instructed to sit there and try to interact as little as possible, only offering finn reassurance if he came to us for it.
so he's in a strange room, with strange toys, and a strange person (the child pyschologist) trying to play with him.
right off the bat, finn started exploring. he is very cautious and slow to warm up to everything- new people, new toys, new anything. so the fact that he wasn't hanging on me or hiding in my hair was a huge plus.
my next fear was that he would completely ignore the strange child psychologist altogether. that's kind of his defense mechanism- he's very shy. but he didn't ignore her at all. whenever she pulled out a new toy or activity he paid attention to her. he didn't always interact correctly... when she sat him down at the table to have a pretend birthday party for the baby doll he didn't blow out the birthday candles. but he also didn't throw everything on the ground and walk away. he sat there and took all of the candles out of the cake and waited for her to sing her stupid fake happy birthday song and then he got up and left. ha!
i was watching for some of the things we've been working on and i thought finn showed some of those things well. she showed him two rubbermaid snack containers- one with goldfish in it, and one with teddy grahams in it- and he chose which one he wanted. choices are something we've been working on. he also handed it to her so she would open the container for him, even though he doesn't know how to verbally ask for help. he also "checked in" with billy and i a few times- coming over for a hug or a touch or some kind of reassurance in this strange setting. that shared attention is a good thing.
he didn't make the best eye contact with her and he didn't respond to her calling his name during the session, but i'm happy that he displayed more of his good skills than his bad.
about half way through the exam finn started to get really tired. he had been running around the waiting room showing off his stair climbing and walking backwards skills to his physical therapist before the exam, and he really wore himself out. so towards the end of the session he grabbed his blanket and the psychologist and hugged her like "please lady, can we just take a nap now?" it was sweet.
then the developmental pediatrician came in and asked us some questions about finn and gave him a look over. finn was really tired by then and went into a fit of hysterical giggles playing with his talking tomcat game on my iphone while she examined him. she thought he was pretty cute.
we go back in a couple of hours to talk to the team and hear their recommendations and the game plan. right now finn is napping. overall, we're happy with the way the morning went. thanks to everyone out there rooting for us! we love you!
i've been struggling for a couple days trying to figure out the right angle to introduce this particular blog post. normally when i'm feeling apprehensive or vulnerable about something it's much easier for me to just report facts. but it doesn't make for very interesting reading. also, somewhere down the line, i know i'm going to want to look back and read what feelings these particular facts were invoking in me. it's a journey i want to remember, even though it's a hard one.
maybe because it's a hard one.
over the past few weeks finn has been moving right along in early intervention. there have been great moments- like bringing me his shoes when he wanted to go outside, learning to drink through a straw, making great eye contact with everyone- but nothing completely consistent.
to be honest, we've had a little extra pep in our step since we scheduled finn's ear tube surgery. ahh, ear tubes! please swoop in wearing a cape and make everything okay. it's so easy to look at some of finn's little nuances and say "it's his ears, it's his ears, it's just got to be his ears." there's a big X on the calendar where halloween is- surgery day- the day he'll feel better.
the day it'll all be better.
and then we got a phone call.
earlier last week. finn's service coordinator through early intervention. there had been a cancellation, and there was an opening for him to be seen by the team for his full autism evaluation screening.
billy and i have mixed feelings about this screening in general. if you have it done through children's hospital the waiting list is a year long. through the county it's up to three months. in our wonderful county, the program is the same (even the doctor is the same) as at children's. at the urging of finn's teachers we put him on the waiting list for both to see what would pop up first.
we thought we had some time.
the purpose of having finn evaluated for an autism spectrum disorder at his young age is basically so that we are eligible for extra funding and extra help. more early intervention services. they really do make a difference, and the encouraging thing is that some young kids who are labeled autistic and receive a crap ton of early intervention can improve so greatly that they no longer meet the requirements for an autism diagnosis when they're older. which is awesome.
the thing that's kind of shitty is that, because of the way these things are funded, you basically have to have autism or an autism spectrum diagnosis to be eligible for extra help. the doctors can't just say "well there are some concerns, we're not gonna slap him with a label, but we're just gonna give him tons of help". they have to call it. if they don't, they don't get the funding, and the kid doesn't get the help.
finn has a lot of the common characteristics of autism.
he also has a lot of characteristics that are not common in children with autism.
but he has enough of the red flags that it would be irresponsible not to have him evaluated.
it's tomorrow.
his evaluation is tomorrow.
i mean, i know it doesn't really matter.
finn is still finn.
what a team of experts has to say after meeting him for an hour and a half doesn't change who he is.
and i know that- worst case scenario- he just gets a ton of help. we just work even harder.
but gosh, it would suck.
i mean, wouldn't it be so nice if they saw him and just said "oh it's his ears. it's just got to be his ears." but i know. it's not just his ears.
80% of the children referred for a full autism evaluation by the team are diagnosed with an autism spectrum disorder. i don't know what's going to happen tomorrow. but the odds are we'll be walking away with some kind of paper with a diagnosis on it. and i keep trying to tell myself that it's a good thing. because if he really does have autism, we really do want him to have every possible resource he can. it's just been easier not knowing, in a way.
after we found out his evaluation is tomorrow, i happened upon this youtube video. it's worth watching.
honestly, after i watched it i thought this:
1) that chick is awesome.
2) that violent dude with the rad hair is pretty cool.
3) little figurine game playing guy is a little different, but i mean he's alright. i could handle it.
4) the bubble boy!
oh please, let finn turn out like any of them but the bubble boy.
i don't know if i could handle the bubble boy.
i know, i'm awful. because the bubble boy is pretty freaking cool. but hard. his mom's life is hard.
then, a couple of days later, i came across this article about a little boy that, aside from his behavioral problems, sounds exactly like what we're going through with finn. and they are from our county! with the same services! and what a success story!
it's just scary because you don't know what you're going to get with autism. everyone's is different. some forms are more functioning than others.
and there are so many things that finn does that i've just always wanted a professional to say "oh no, that's not autism, that's just bla bla bla."
it's easy to make excuses for him. to think he'll grow out of it.
every night i dream that he talks. literally every night.
in some ways, i feel like if they tell me tomorrow that they just don't have enough evidence to label him autistic, but we're going to keep working with him, i feel like his future would seem so much less scary. so much more hopeful. but if they tell me it's something, what's ahead just seems so ominous. but i guess what's ahead is always that way. we never really know, do we?
so the past week i've been a pile of nerves. (i mean, can't you tell by this insanely disoriented blog post?)
but then today was this wonderful gift.
finn and i just had the best day together.
we went to the park, and for the first time ever, he played on the playground. (not just the swings!)
he climbed up the little stairs and went down the slide! by himself! THREE times!
we played a game together... we took turns running down the hill of a little ditch and climbing back up. he would gently push my back when it was my turn. sometimes we would hold hands and do it together. he was so thrilled and proud when he ran down by himself and didn't fall.
we went home and played, and he got a case of the giggles and just died over everything.
he grabbed my neck and hugged me and kissed my hair a hundred times.
and i just felt so... full.
and happy. and relieved. and hopeful.
because, he's mine.
right now, in his little 19 month old world, i am his very best friend.
oh, for everyone to know what it feels like to be loved the way this little boy loves me.
it's everything.
and it doesn't matter what he has or what he does or what anyone says about him.
because i know who he is. and he's wonderful.
we are hoping and praying that tomorrow finn wakes up feeling great, and is at his best during the evaluation. we are also hoping that the team of doctors and professionals working with him and evaluating him will be able to see him for who he really is- all of his wonderful parts and all of his struggles- and that they will be able to suggest the best possible interventions for him individually, to achieve the best possible outcome.
thank you so much, to all of our friends and family, who take the time to think of him, and pray for him, to send your positive thoughts and hopes his way, and who care so much about all of us. i'll update the blog as soon as i am able.
we are so blessed to have this little boy. i really don't know how i got so lucky.
finn's three month review is coming up at the end of the month.
it's hard to believe that he's been in early intervention for three months already!
but talking with his teachers this week about his progress has been really encouraging.
yesterday his special instruction teacher said he is like a totally different kid than when we started. and it's true!
i'm so glad they can see the big differences even though they only spend an hour a week with him.
it could get a little lengthy and boring to talk about the full span of finn's progress, so i thought i'd focus on one of the many big improvements we've seen because of early intervention and hard work:
pointing!
pointing is an important developmental milestone because it displays
this wonderful thing called "joint attention" which i've talked a lot
about.
it means your baby wants you to see what he sees, and wants to
bring you into his world.
sharing an experience.
it's all part of the very beginning of learning how to relate to others and the world around you.
when we started early intervention, finn could not point at all.
when i say he could not, i mean not only did he not point at things, but he physically had no idea how to make his hand and fingers into a point.
one of the first activities we did with finn was using hand over hand to have him point to pictures in his favorite books as we read it.
this task was SO difficult for him that we had to adapt it so that he just had to smack the picture with his palm.
for me, trying to form his little hand into a point was virtually impossible. he would make all of his fingers rigid or make all of his fingers loose. he just didn't get it. so for a few weeks i just grabbed his hand and made him smack the pictures instead of point at them:
"on monday, the caterpillar ate one apple! can you touch the apple?"
< smack >
"yayyy that's the apple! good job, finn!"
< kicking/whining/fighting >
after a few weeks of that, finn started letting me make his hand into a point to point to pictures. he didn't fight it- he actually wanted me to help him do it.
then a few weeks after that he made his hand into a point by himself and i just had to guide his wrist to point to the picture.
then, a couple of weeks ago he started pointing to some pictures by himself. hooray!
i wanted to mention the pointing skill specifically because we have found one tool that reeeaaally is motivating for him and has turned him into a pointing master.
and believe it or not, it's an iphone app!
finn likes to watch youtube videos on my phone... like disney songs or sesame street songs... and he taught himself how to open them and hit play from watching me do it.
it's a pretty finite pointing skill to do that, so we thought we'd expand on it.
his speech therapist told me about the app "peekaboo barn".
it's a little barn that has doors that open up when you tap them.
every time the door opens it reveals a different barn animal (i think there's around ten) and it makes the animal noise and then says the name of the animal, as well as the printed word of the animal on the screen.
finn LOVES this game.
and i love it, too! it is teaching him to use his pointing skills, he has to give something to get something... (tap the door in order to open it and tap the door in order to close it for another animal), and he is learning animal names!
i really recommend it for any toddler, especially one in early intervention.
finn's face just lights up for this little game, and he will find my phone and bring it over to me so that he can play it. (bringing us things is another very recent skill that we are loving!)
such a funny little thing like playing a simple game on my phone doesn't seem like much, but when i look back to two and a half months ago at the little boy who literally couldn't make his fingers into the shape of a point, and i see him now pointing his little way through a barn full of animals, i see how far he's really come.
a lot of times in early intervention it's hard to see the big changes day to day, and it's hard to feel like you're making much progress at all, but i think that's why they have the little three month reviews.
because when i look back that far, he really has come a looonnnnggg way.
we are so so grateful for our awesome team of early intervention teachers who push finn (and me!) to our limits because they believe in him and know he can do it.
like i said, pointing is just one of the little examples of his progress.
we are seeing such big changes with finn across the board.
little toys that he used to zone out on or flick or spin, he now plays with correctly and brings them to us to show us or ask for help with it.
he uses a fork, he brushes his teeth, he makes eye contact, he is more comfortable exploring his surroundings and can climb up and down the couches and the stairs.
these are all things that he literally could not do, was scared to do, fought us over, and completely resisted three months ago.
i really feel like we were successful in identifying some pretty scary early warning signs and "sticking our foot in the door" before it shut.
some days i feel like i'm getting the door to open up a little further, some days i feel like it's standing still, and some days i feel like i'm struggling to maintain the little space that i have.
but when i look back to three months ago, it is so obvious that we have pushed that door open big time.
finn has to work a lot harder to learn new skills than a lot of other kids his age.
he doesn't just "pick up" on things and acquire new skills, he has to be taught them.
even the little things.
but he tries SO hard and he is so happy with himself when he learns to do something new! we are SO proud of him!
way to go, finn!
here's to another awesome three months!
in case you didn't read the subject, this post is about ear tubes.
full disclosure.
you know what you're getting yourself into.
i don't want any complaints about the boring ear tube post. i warned you.
this blog is gonna be a reeeeaaaal page turner.
i can see you now- on the edge of your seat.
ready to hear all about ear tubes. (intentional pun)
anyone still around? anyone? okay then. this one's for you there in the back, avoiding that other more important thing you're supposed to be doing.
here we go!
ear tubes seem to be pretty popular these days. it's a nice option that doctors put on the table. live in misery and on constant antibiotics, or have this quick procedure to have tubes put in your ears.
i'll take it.
i come from a particularly mucus-y family (seasonal allergies represent! can i get a what what! and by what what i mean kleenex! actually just pass the whole box one is not going to cut it! thanks!) and billy and i have ear tube kids on both sides of the family. everyone we talk to about ear tubes loves them. and why not? it's a great solution to help ears drain on their own so all the fluid that builds up in your poor mucus-y kid's ears doesn't get infected and make everyone miserable.
and i mean everyone.
the whole family suffers from infected ears.
yeah, tuck, i'm looking at you.
ear infections cause extreme grumpiness throughout your entire house.
so last fall, we found out that our baby inherited two popular familial traits: 1) extreme awesomeness
2) extreme mucusyness. i'm making that a word.
and for the trifecta, he also happened to be one of the super lucky that has ears perfectly designed to store fluid perfect for a bacteria breeding ground.
in other words, he gets ear infections.
last fall we had three and a half solid months of back to back ear infections, antibiotics, high fevers, e.r. trips, and lonnngggg long sleepless nights of taking turns holding finn upright in a steamy bathroom so that he could sleep. it was a blast.
then, in december, he got ear tubes.
here's the funny thing about our experience with the ear tubes-
after we got them, finn's ear infections stopped. (as expected)
BUT
his ear tubes never worked. (huh?)
meaning, every time we went back to the doctor for a follow up, his ear tubes were clogged.
so, by some miracle (the end of fall and a mild winter) finn stopped getting sick.
but not because of the tubes.
they were just kind of in there not doing their job.
every three months since december we've gone back to the doctor for a follow up hearing test and to check on his tubes. every visit has been the same- tubes still clogged but no fluid in his ears, so no need to replace them. every hearing test was ruled passing but "borderline" whatever that means.
until last week.
i took finn back to the ear doctor for his three month follow up and whaddaya know, with the arrival of fall came the arrival of fluid!
welcome back ear fluid! i will think of you every time i think of pumpkins. awesome.
turns out one ear is full of fluid, and one ear is full of so much pressure that the tube in his ear is smashed up against his ear drum. and yes, i'm sure that feels like shit.
he also had a weird hearing test. he responded well to voice, but did not respond well to sounds. his ear drum didn't react the way it was supposed to either. the audiologist said she thought finn should be hearing better, and that she thinks it is part of the reason why he's not talking. maybe not the whole reason, but part of it. interesting.
so, the good news is, finn is getting new tubes this month! we are really encouraged and hopeful that this next set will actually work. and we're hoping that we see big improvements in his balance and motor skills- and hey, maybe if he can actually hear things right and isn't in constant ear discomfort, he might even start talking!
the bad news is, his surgery is on halloween.
this is bad because we have to wait the full month (we're already on our first batch of amoxicillin), and because halloween is a crappy day to spend in the hospital.
last halloween finn was fresh out of the e.r. after a week of 105 fevers that were misdiagnosed as a "virus" and turned out to be- what do you know- an ear infection! he was full of i.v. strength antibiotics that came with a bad case of the runs, and then to make matters worse i stuffed him in a bear costume and drew on his nose with eyeliner.
so yeah, after this year he'll probably hate halloween forever.
sorry, bud.
but we're really excited about our second shot at ear tubes.
finn's doctor assures me that it is incredibly rare to get two sets of chronically clogged tubes, so we know this set is going to do the job.
and after the year he's had, this kid deserves a break.
we hope he wakes up on halloween feeling a whole heck of a lot better!
this concludes the post on ear tubes.
you're excused.
i know you have more important things to do now, like look up crock pot recipes on pinterest.
it's fine, i understand.
but if you're still procrastinating you should check out this blog that my friend amanda told me about because you will probably pee yourself.
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