Thursday, April 2, 2009

Dylan's Eyes...and stuff.

A few months ago, while Dylan was looking up at the ceiling, I noticed that his left eye looked "off". I had been trying to point it out to people, but no one really noticed it until recently. It was almost as if his left eye would...wander, just the tiniest bit. It was beginning to concern me, plus Dylan was due for his first opthamology visit anyway, so off we went.

See...we have just recently made the big switch with our pediatrician and, well, everysingleotherdoctorthatwentalongwiththem. I have not been that pleased with Dylan's pedi as it seemed as though her experience with Down syndrome was quite minimal. I felt like I had to research information on my own and then let her know of my findings. I am reallllly not comfortable trying to be Dylan's doctor, so we switched. Not to mention, there were a couple of instances where she referred to other babies as the "normal babies" (as in, your baby is somehow abnormal?) as well as a time when she told me that we should start trying to apply for SSI because "when Dylan is older, he probably won't be able to work.". Yeah. Thanks for that. Buh-bye!

Now we are completely involved with Boston Children's Hospital (eyes, ears, heart, GI...) and I feel soooo much better about everything. I feel as though we will be receiving the very best care in this area from doctors who have loads of experience with Down syndrome. Whew! That's a relief.

And yesterday, it was about those eyes.

It appears that Dylan's left eye has some sort of nerve malfunction. This is not anything that has to do with Down syndrome, but apparently was just some kind of fluke that happened while Dylan was forming inside of me. I wish I had the technical term for it, but 1. Cassidy was in the middle of a rather embarrassing tantrum while the doctor was explaining it all to us and 2. the doctor told me that she did not want me going home and googling the term because she said that it would only cause me to worry and there was nothing at all that I could do about it anyway.

So that's what that eye wandering thing was all about. Of course, you know that I am going to call her back today and get the technical term anyway. So I can Google it. And worry.

We also found out that Dylan is near sighted but most likely won't need glasses for a few more years.

You know...I just can't wait to see how adorable he is going to look in specs! : )


melanie said...

Good for you for changing pediatricians. You've got to what feels right for you. Dylan & Cassidy are the luckiest kiddos for having such a wonderful mother - not to mention they are both SO adorable.

Wendy P said...

Good for you for trusting your instincts and switching doctors!

Not that you need it now, but makes frames specifically for kiddos with Ds. We got Kira's from them and they fit her really well - when she leaves them on, that is.

Kimberly said...

I am glad you changed! Any stress that can be taken off you is great. You make me laugh, it is scary how similar we are. It is like, how can I find something to worry about? If the Dr. said not to worry, don't. They would tell you if there is reason to be worried. Dylan would look so cute in glasses!

Leigh Anne said...

yes! good for you for switching. we did the same when syd was only about a month old. we love our pedi now! i think that's uber important...& it sounds like dylan will get even better care now!

and i bet he is going to look even cuter than he already is in those specs!

Cathy said...

I am considering making an appointment with the Down syndrome clinic in Chicago. Not so much because I think that Lily's pedi isn't doing a good job, but because they know more what to look for. I'm hoping that they could coordinate things with Lily's pedi.

I'm glad that you switched. You can bet that if Lily's pedi EVER says anything 1/2 as insensitive as yours did I would be out-the-door...never to return!!!

Be careful with the Googling...Lily has nystagmus. I googled it prior to going to the eye doctor (because her pedi was fairly certain that's what it was) and it freaked me out. According to her eye doctor, it's not that big of a deal. It may require some exercises some day but nothing now.

Keep us informed about what they are doing at the clinic. Since L and D are so close in age, it will help me too :0)

Karly said...

Glad you have a good group of docs. We have done the pedi and specialist swaps as well. We see the ophthalmologist every 6 months and pretty much have been told the same thing...glasses in a few years. Hopefully when both Dylan and Kailey are better at wanting to keep them on, right?! ;)

Angela said...

Sigh. It's like you and I always say...It's always something. Sorry about the eyes. Benjamin actually went at four months for an eye test b/c at six months, he was a little busy with OHS. He was a little nearsighted (or maybe it was farsighted...I can't remember) but the doctor said he was *so* young that he might grow out of it. (Baby's lenses are so short anyway b/c they're so young.) We go back May 4 for another test. At least this time I will be prepared to wait three hours (UGGGGGH).

As far as the pediatrician, my husband and I were just talking about this last night. The first couple of years of Andrew's life (prior to Benjamin), we liked our pedi okay. She was competent enough but not horribly personable and always seemed to be in a rush. But Andrew never had any issues. Not one ear infection, not one stomach bug. Just a couple of colds. (Still to this day...knock on wood...) So after B was born, my hubby and I immediately discussed that if our doc didn't prove herself to be great with the DS aspect, then we would switch for sure. BUT SHE HAS BEEN SUPERIFICALLY WONDERFUL! Seriously, we didn't know she had it in her. And we are so glad! I totally would have switched in a heartbeat, and I'm so glad you did! Maybe now you'll get Dylan that upper GI to ease your mind! :)

Adrienne said...

I hear ya on the embarrassing tantrum and the googling the term- I would do the same thing- just so I'd have something else to worry about!

Glad that you are going to doctors that can provide better care for Dylan!

Sharon said...

Dylan is definitely in good hands at Childrens...and the Ds Clinic is great about giving referrals if you need them.

Anne and Whitney: Up, Down and All Around said...

Oh my gosh, I can just imagine the tantrum while the doctor was trying to explain about Dylan's nerve in his left eye... sorry you had to go through that - it is always nice when 2 year olds decide to do that!

Glad you switched to doctors you feel more comfortable with and that seem to be doing a great job for little Dylan! We just took Whitney for her first ENT appt 2 weeks ago (she still has not passed an OAE, only an ABR and we are getting ready to do another because she just is NOT hearing correctly) and I am planning to switch to one with more experience w/ Ds + willing to take more time and be a little more empathetic. She was great for Anne with her 2 sets of tubes, but this is a whole other ball game!

Will they be able to do anything regarding the nerve in his left eye? I can't wait to see how adorable he looks in his glasses in a few years :)

The Lehnick Family said...

Glad you found a better is so important to feel comfortable with the doctors! I'm with everyone on NOT the thing to do, but we all do it! Darn computers! Glad all is good though...and I LOVE glasses on little ones, so if he has to later...he will be so cute!

Loren Stow said...

Good for you! I think it's fantastic that you have found doctors that really support you and Dylan!
I love reading your blog - it is so interesting and you have such a way with words!

Tausha said...

So glad you changed Doctors. We are thinking of doing the same thing. I think Dylan will look sooo cute in glasses!!!!!! With our family history of eyes I am sure Sam will need them sooner then later.

Tammy and Parker said...

A good pedi makes ALL the difference. Ours literally saved Parker's life. We are so grateful for her!

Amy said...

I'm glad you are happy with your doctor.

Oh we will need photos of Dylan in glasses for sure. He'll be adorable (well even more so than now, if that is possible).

Hector and Jennifer Varanini Sanchez said...

Joaquin has a strabismus (sp?) so I know all about the eye worries. There is a surgery to straighten his eyes out that the first eye doctor we went to was very quick to suggest. We got a second opinion from an eye doctor who works a lot with kids with DS and he said that surgery is like a quick bandaid but doesn't work on the root of the problem and gave us exercises etc to do with him. I'm sooooo glad we got the second opinion.
You did the right thing by switching doctors!