Every time I sit down to try and write this post, I am short on words. I think I feel a little overwhelmed as usual, so I just don’t know where to begin. And today of all days, I am riddled with anxiety. But I need to avoid online shopping. So I’m going to do my best. My last update was about 9 months ago, and since then, there’s not a ton of new information, but I can share with you what I shared with Stevie’s social worker. Then it can be more factual and less emotional! Well, actually, no promises there.

Audiology

Stevie had his hearing checked for the first (and last) time way back in 2013. He was just a little chicken then! We knew eventually we’d need to have it checked again, and with his newfound diagnosis… it was time. Hearing loss is a known genetic factor for BWS kids.

After three rounds of hearing tests through the year, it was determined that he does have some mild, permanent hearing loss. I honestly can’t say that I am surprised, but it was like add it to the list, mmkay. H-to-T (trademark Tyra Banks) there is something.

The latest hearing test was in October 2018. They let us know we should make an appointment right away to get him fitted for hearing aids. Like the good secretary that I am, I called immediately and we are on the books for JUNE OF 2019 (!!!) Sometimes it’s just not possible to get things done, even when you’re ready. The constant old game of hurry up and wait.

Ophthalmology

Stevie’s new glasses/prescription seem to be working well. FINALLY getting this one right after so many frustrating mistakes from his old doctor gives me peace of mind. For the record, I wrote his office a strongly worded letter and never heard from them again. Hmph. Stevie had some follow-up testing with the new doc to make sure there were no eye abnormalities, congenital issues, or genetic markers for future problems. Everything is good for the time being.

Stevie still rolls his eyes back and has some fluttering, but it doesn’t seem to be neurological and doesn’t seem to be affecting his immediate vision or processing. I guess it’s just something he has learned to live with.

We’ll see his eye doctor again this summer to update everything.

Cranio-facial Team

This was a BIG doctor’s appointment. YUGE. LONG. And we survived it. Seven hours at Children’s Hospital meeting 6 different doctors to discuss Stevie’s cute little face.

As cute as that face is, there are things about it giving him difficulties. The most obvious problem being the constant drooling. With less obvious underlying issues like a small lower jaw, crooked teeth, a high palette, snoring, eating problems, and hearing loss. With so many factors to take into consideration, the hospital organized a team of doctors to meet with him once a year, and then meet with each other so they can all be on the same page about his treatment plan. Pretty amazing for me actually. I don’t have to find 6 different doctors to treat him!

So we first met with a general pediatrician who went over his health and hospital records. As we were chatting, she casually asked me if I ever “followed up on his kidney issues”. I must have stared at her for a full minute as I processed the words she was saying. Kidney issues? I don’t know about any kidney issues. Sensing my confusion, she explained to me that at the time of his first heart surgery, there were some markers on his ultrasound that pointed to possible kidney problems.

Again with the staring.

She said she was sure he was fine, but we may as well schedule an adrenal ultrasound just to verify. Uh-huh. I will never believe everything is fine until I’m holding those test results in my hand.

Well, even though Stevie had a hard time sitting through the ultrasound, I have the results. And he is, in fact, fine.

PHEW.

The rest of the day consisted of meeting with a facial reconstructive surgeon, an audiologist/speech therapist, an ENT, a dentist, and an orthodontist. And the bottom line is that they will continue to monitor him and his growth to plan – and adjust that plan – for when he’s older. No immediate action to be taken. Cool.

Cardiologist

Each year, this is an important and nerve-wrecking appointment for us. It’s been good news for several years running, so we’ve kind of been waiting for the ball to drop. But taking everything into consideration, we still got good news. Excellent news even.

Stevie has a leaky valve, with some backwash (nothing of major concern) and some stenosis – or narrowing (a little more concerning). So we had to have a sedated MRI to get everything looked at. That wasn’t fun. At all. But based on their findings, Stevie can have the stenosis repaired in the cath lab (no open heart surgery!!) and if all goes accordingly, this repair will carry him a couple more years before needing any further action.

I think the biggest relief is that the procedure will take one day with very little in the way of recovery time. With open heart surgery, it’s typically a 6-week recovery and doctor’s orders to take things easy. But if we know anything about Stevie, “taking things easy” does not exist for him. Even when he’s sick, he doesn’t slow down. So I can’t imagine trying to get him to relax for one hour, let alone 6 weeks.

We are feeling so fortunate right now for this outcome!!! He will go into the cath lab on March 8th, so please keep us in your thoughts. Until then, it’s business as usual with the hope that he stays healthy.

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Development

This child continues to grow like a weed and I feel like I’m just constantly changing out too-small clothes and tattered shoes. Speaking of shoes, Stevie has finally learned to put his on!!!! Most of the way. He still needs a little help here and there, but he’s got the idea, so it feels like YEARS of working on that has finally paid off. He’s also partially able to dress himself, and I think learning a few more visual cues on his clothing will help get him there all the way.

Stevie loves school, and though he is very far behind academically, he is a social butterfly with a good sense of humor and seems to be most excited about sharing the drama that went down on any given day. He likes to “do math” on the big white board in class and is so proud of himself when he completes his work and gets a happy face. He is joining the mainstream kids a couple times a week for computer class and library time, and also loves share time; when all eyes are on him and he gets to talk about his latest favorite Hot Wheels car. He fights me on homework but he always gets it done, along with a chore every day after school.

He gets therapy at school, and when they tried to take away 30 minutes of Occupational Therapy, I said no. Absolutely not. So there.

He’s still active in swim class 2x’s a week, with a therapist-led play group every Wednesday. I’m supposed to be getting him extra PT, OT, and ST outside of school, but who has the time really. Also, nobody has space for him, and this is the one time I’ve been lazy about following up. I know I’ll be much more pleased with myself once I get it on the books and have it handled, but ugh. It’s just hard to be advocating ALL THE TIME. And I feel very torn about making sure he has the tools to succeed and making sure he has time to be a kid. I don’t know which is more important, some things just don’t carry the same urgency for me at this moment in time.

But that can change hour by hour — mostly when I’m stuck playing Hot Wheels, I’m like this child needs to be in Speech Therapy right now. Haha!

If I talk about our expectations for Stevie and his future, I will surely cry. So I’m not going there today. But I’ll just say that I’m proud of him. He has to work so hard. And while the days can be so long and annoying, we still always put him to bed speaking of the moments we are proud of. I can only hope that stays with him as he navigates growing up. If there ever comes a day when he realizes that he is different from other kids, I wish wish wish with all my heart that the love and pride we express to him is enough. That he will have the bravery and perseverance to carry on in the moments that we can’t be there.

Just as every parent wishes for their own children. I know. You see, I keep telling you we are not so different.

loves,
jaana