Tiptoeing Through the Tulips

Today we are lucky enough to get to meet Graham through a compilation of thoughts by his mom Cristin Russell at Tiptoeing Through the Tulips.

Before we begin, for those of you who may not understand the significance of tulips and special needs, you absolutely must go here and read Welcome to Holland before you do anything else. I would dare say that this is the general mantra for all special needs moms and dads, and part of the inspiration behind Cristin's blog. Just click here for a clear picture of how it feels to be the parent to a special child.

NOW you're ready to go and you are in for a real treat. I love the way Cristin thinks and writes. As she told me, she can be 'a little crude,' but I left everything in because it's real and honest, and usually very funny. Her words are a delight to read and she and Graham inspire me to just be. I love that. Enjoy!.........

There are a bunch of significant dates in Graham's little life. The day he was born, the day he didn't die, the day he finally came home. And this day stands out; the day we found out he was losing his hearing.

I was so pissed. I don't like surprises. Despite being warned by the entire surgical team that he was at a 'Very high risk for a significant hearing loss' (due to gentamycin and ECMO.... lots of both), I still didn't see it coming. He was at a very high risk for being dead and that didn't happen so....

He'd made it through that scary first winter with several trips to Children's but no admissions. It was Springtime, he was "healthy" and happy. I walked into that audiology appointment fully confident that his hearing was perfect. He was saying a few words, he loved music....

The test was kind of fun. Graham sat on my lap while the audiologist watched his reactions to certain sounds. It was my first test, I didn't know what normal reactions were, so even after the test, I was shocked when the audiologist told me,

"I'm worried about Graham's hearing."

"Really?"

She jumped right into hearing aids, sign language, speech therapy...

"Really?"She handed me The Folder:

As if your child isn't fucked up enough all ready, now he's Deaf.

The folder was full of helpful resources for raising a child with a hearing loss. Educational options, hearing aid providers, sign language classes. I was still too pissed and shocked to absorb any of it. I got out of there as fast as I could.

I was proud of myself for not breaking down until I was alone in the parking garage elevator. I called my sister in law sobbing on the way home,

"But he loves music...he's talking...the damn barking dog wakes him up... WAHHHHHH!!"

I thought about his speech and knew it was true. He could say "Mama" but "Dada" had become "Baba", he'd stopped saying "Nana", things I thought were just normal baby things were happening because he wasn't hearing some sounds.

I got over myself quickly. On the way home I stopped and got a Sign Language dictionary. I started signing with him right away. I started yelling at him and some sounds came back. Speech therapy started within a month and he got his hearing aids that Fall.

I learned about Deaf Culture.

Learning about Deaf Culture and the Deaf Community was comforting. He didn't have to be the scarred up, tube fed kid amongst all the typical kids. He'd be surrounded by kids who were at least Deaf like him, his other differences wouldn't matter. He'd have Deaf adults around him to serve as role models. He'd speak and sign and hopefully have both the Hearing and Deaf worlds open to him.

I think we're doing ok so far. He has Deaf and Hearing friends. His language is pretty funky but his speech is excellent. He knows more sign than I do. He still loves music.

He asks for his hearing aids and tells me when they're not working.

He likes to be Deaf Kid sometimes and not wear his aids.

He's an awesome sleeper.

He's easy to spy on.

He's wicked fun to sneak up on....

Graham started physical therapy around 5 months old. He HATED it. For two years I dragged him in twice a week so he could scream and yell and not do anything the poor PT tried to make him do. I don't want to say that she gave up on him, but she knew she wasn't really helping him and suggested taking him to Gymboree.

I had never thought of it myself. Her reasons were that the atmosphere would be one of play and not work, and maybe if he were allowed to just explore on his own, he would try to crawl, climb, go up stairs...all the stuff she couldn't convince him to do.

He was 2.5 years old when we started. His PT was right. He made more progress in 3 months at Gymboree than he had in two years of physical therapy. His teacher for the first session was amazing. Graham and I both loved her and we all ended up becoming friends and going on play dates together. We loved it so much I signed him up for another session, this time with a different teacher.

Now, there are those who have a very special quality that allows them to work with children. It's a certain kind of patience, a young spirit, a sense of wonder and excitement that allows a person to relate to children. This girl had NONE of these things.

She was awkward and uncomfortable around all the kids and parents. She stumbled over all the stupid songs. She had no clue how to engage a bunch of toddlers in any activity. She flat out sucked.

Graham had obvious issues. He walked funny, he didn't crawl, he didn't climb, he barely talked. After a few weeks, this dipshit of a teacher came up to me and asked;

"So what's wrong with him anyway?"

coolest. kid. ever.

I almost laughed in her face. I mean, I've had a lot people say a lot of dumb things to me about Graham but, What's wrong with him?? I actually felt sorry for her that she thought this was an ok way to ask about a 'special' kid... then I felt bad for her children.... what kind of example was she setting for them?

And now I wonder.... are any of the folks reading this thinking the same thing? I've never really fully explained the kid.

So here goes.

Graham was diagnosed at birth with a Right Sided Congenital Diaphragmatic Hernia (CDH). A hole in the right side of his diaphragm allowed his liver and intestines to travel up into his chest cavity.

When he was born, he never took a breath because his lungs were being squished by the intruding organs. They tried to intubate and bag him but this was very difficult because his lungs really didn't have room to expand.

He was flown from Burlington Vermont to Boston to be placed on ECMO. (For you nurses out there; his O2 sat when he got on the plane was 62%, during the flight it went down to 20%, while they were putting him on ECMO it went as low as 8%.... scary eh??)

By the time he got to Boston his lungs were badly damaged due to being bashed against his liver and intestines for over 12 hours. His surgeon said they were a cross between tissue paper and swiss cheese...not good.

ECMO is a heart lung bypass machine that circulates and oxygenates the blood to give the heart and lungs time to rest and heal. It comes with serious risks including brain bleeds and blood clots. Most hospitals will only put a child on ECMO once, some don't use ECMO on CDH babies at all.... something ridiculous about the risks outweighing the benefits.

He was on ECMO for 5 days and he looked good enough to come off.

He got steadily worse for a week, and the radical decision to put him back on was made. We made the decision with the assumption that he would die, but his surgeon had convinced us that no matter what happened, he'd learn something that could possibly help another CDH baby.

Graham had surgery to repair a hole in his lung in the ICU before they put him back on ECMO. At first they just bypassed his lungs. Within two days he was in heart failure so they went back in and attached the ECMO cannulas very close to his heart, during this procedure they severred a nerve paralysing his vocal chords on the right side.

He spent two more weeks on ECMO. During this time he suffered two brain bleeds, and a blood clot destroyed his left kidney. He had many serious infections requiring massive doses of antibiotics. The antibiotic Gentamicin is responsible for Graham's hearing loss.

Graham left the ICU after 8 weeks and spent another 6 weeks getting bigger and stronger. Because his organs were stretched and his muscle tone so poor, he suffered severe reflux which he was aspirating into his lungs. Had no suck/swallow reflex... he couldn't even suck a pacifier. He aspirated thin and thick liquids when we tried to feed him.

At three months old he had a Nissen Fundoplication to stop the reflux, had his left kidney removed and had a g-tube placed.

He came home after 101 days, on meds for seizures (oh yeah... he had some seizure activity while suffering a brain bleed), reflux, and diuretics because he was on so much formula to fatten him up.

His muscle tone was and still is pretty low, hence all the physical therapy.

I started to try to feed him by mouth at around 6 months but it never went well. His oral aversion was so bad that he'd gag at anything that went near his mouth. He's been in feeding therapy since he was around 10 months old. He only started eating last fall.

We learned about his hearing loss when he was around 15 months old. It started out mild but has progressed to profound.

Graham with his little sis Dottie

So now you're all up to speed.That's what's wrong with him.

Oh, and he still shits his pants.... now that's wrong.

Thank you to Cristin for your willingness to be so open and honest. If the rest of you haven't had enough Cristin, hop over to her blog by clicking here for more fabulous posts. This girl just never stops cracking me up, all the while inspiring me. I don't know how she does it!

Remember to leave a comment and let us know what you learned from Graham and Cristin. And this will also, of course, put yourself into the drawing for this week's giveaway, a PediEgg. I can't believe how much people love these things. Apparently, you really better comment because the PediEgg is heaven for feet.

Cheers!