Monday, March 30, 2009

10 months old, fish faces & upcoming appointments

Happy 10 month birthday, Maya!

Maya has started sucking on her lips and making fish faces, like this:

(disclaimer: THIS BABY IS NOT MAYA. I just googled to find a pic that showed the face.)
I think it has something to do with teething. She doesn't have any teeth yet, but you can feel 2 big bumps on her bottom gum where the first ones will be.
Upcoming Dr. visits (the next 2 weeks):
-Thurs (4/2): 10 month pediatrician visit
-Fri (4/3): Swallow study (at a hospital downtown). She will drink a barium-laced bottle (and possibly eat some food too) while getting x-rays done so that we can watch her eating process. It seems likely the her suck-swallow-breathe coordination is off, and this will let us know for sure.
-Mon (4/6): Big meeting with the developmental pediatrician to go over the results of all of the evaluations that have been done over the past 2 weeks.

Wednesday, March 25, 2009

All done!

Our doctor appointments are DONE. Well, for now. Until next Thursday night. Oh, and then April 6th. And 2 on the 20th. And one on the 30th. Oh well. It was a nice celebratory moment while it lasted :)

Today we had physical therapy & occupational therapy evaluations. I thought they were intersting (mostly playing on the floor with different toys, trying different positions). Poor Maya was wiped out by the end . . . it was like baby aerobics).

(Did you know that if you Google "baby aerobics" this terrifying picture comes up?!?!)

The therapists both said that she'll qualify for services based on her delays, but they were impressed with her positive attitude and willingness to keep trying new things. We learned a few new exercise tricks, too :)

New appointments on the horizon:
Thurs, April 2: Normal 10 month pediatrician appointment
Mon, April 6: Meeting with developmental pediatrician to review the results of the 5 evaluations

Thursday, March 19, 2009

Giggly video

For some reason I can't embed the video right now, but check out this video of Maya giggling:

Wednesday, March 18, 2009

Today's medical briefing

Shout-out to my dad for coming with Maya and I to today's appointments. It's really helpful to have an extra set of hands, and a bit of moral support as I answer the SAME negative questions (Nope, she doesn't say Mama. Nope, she doesn't clap. Nope, she can't hold herself up.) Good times.

First of all, what the hell is physiatry? I was going to put in a little hyperlink here to explain what it is, but I have no idea. Everything that I found online compared it to physical therapy, but we have a physical therapy evaluation next Weds. I did a Google Images search to find a picture to help explain physiatry and this is what came up:

Does that help? I find Olivia Newton-John to be very helpful in explaining medical situations.

Anyway, at this appointment I answered the same questions again, she did the same reflex tests and experiments that we've already done twice (holding blocks, tilting her when she's sitting to see fi she tries to catch herself, etc.) Same findings-most skills are around a 6 month old level, with a few good standouts.

Feeding/Speech & Language
Not much of a surprise, she has issues eating and is also behind in the babbling noises she's making. She should make more consonant noises, but doesn't (not shocking, since her tongue is often all over the place). We'll probably schedule a swallow study sometime soon because it seems like she has trouble negotiating sucking/swallowing/breathing. Oh, and I realized that we don't spend enough time repeating words & trying to teach them to her. So we need to do that more.

Met with Maya's service coordinator
Nice guy. That's about it.

The good stuff
Man, she's a really good sport about all this. Every doctor that we've seen has commented on 2 great things: she's super social (smiling, making noises at people) and really happy. She's a laid back, good natured kid.

That's all I remember, but I may be leaving something out because I'm beat. I'm at Starbucks (again) trying to finish my lessons for tomorrow. Back to work.

Monday, March 16, 2009

Doctors' Updates

Medical update:

1. Developmental Pediatrician: Answered a million questions (does she clap? does she transfer objects? has she ever gotten mad and given you the finger?), brief physical. It seems like most of her skills are around a 6 month level (instead of 9.5). Exceptions: she has good fine motor finger skills, she's very social, and very focused on whatever she's currently paying attention to.

Downside: When discussing Maya's genetic testing to rule out Mosaic Down Syndrome (which came back negative), the dr. pointed out that we have to go back to the genetics team when Maya is one. If she still is experiencing developmental delays then (which is likely) it will mean more specific genetic testing to rule out more syndromes. We were kind of hoping the genetic stuff was done, so it's a bit disappointing to know that we probably have more on the horizon. Doesn't exactly put your mind at ease. But some of her unique physical features (combined with developmental delays) could be indicative of a problem (or could be indicative of nothing). Who knows.

2. ENT: We have the best pediatric ENT ever. Seriously---if you need one in Manhattan, go see Dr. Jay Dolitsky. He's the best. Since her ear infection cleared with the antibiotics, her adenoids are much less swollen (65% instead of 80%). Her nasal passages are less swollen since we've started to manage her allergies. There's a possibility that she has silent reflux, since she has slight redness at the base of her esophagus & reflux can also cause the adenoids to swell.

So we've tentatively scheduled adenoid removal for the end of April, but in the meantime we're going to do a trial of reflux meds. The week prior to the surgery date he'll check her adenoids again . . . if they've become smaller (from the reflux meds) then we'll cancel the surgery . . . if not, they'll come out.

And that, my friends, is the end of the medical update until Weds, when we'll have the physiatry eval and the feeding eval :)

Sunday, March 15, 2009

Here are some pictures from today . . . I took both of them with my phone, so the quality's not so great, but whatever. Maya & I spent some time at Starbucks this morning, which is our typical outing. She loves to look around at the people, and I like the espresso. We're getting to know the cast of characters who call Starbucks their home and my 2 favorites by far are: Loud Grumpy Old Man who tries to get strangers to play chess with him and Goth College Kid who takes out books, stares at a page while he drinks a cup of coffee with shaking hands (sometimes he forgets to open the books and just stares at the cover . . . Maya suspects he's on something. I concur.) I must be Lady Who Sits With Baby for 2 hours with giant iced latte.

Hiya everybody!

Peanut's new digs
(She moved to an outdoor hutch on the terrace because of Maya's allergies and is having a great time.)

Friday, March 13, 2009

Maya's Medical Summary & Upcoming Appointments

Maya's been having a bunch of health issues, which people know about to varying degrees . . . this isn't because we're trying to keep things secretive, but because there's so much going on that it's hard to remember who I've told what to, and who has time to send a million emails about stuff?

So here's the summary thus far:

-She's super allergic to cats. So Layla, my lovely cat who's been my faithful companion for the past 7 years, had to go :( My sister took her in and she now lives with a dog and 2 other cats (one of which could be her stunt double).

Mom! What the hell?! Are you trying to kill me?!

Layla and her new buddy, Tucker

-Her adenoids and tonsils are way too big. They are probably going to have to come out sometime soon.

-She's behind on most of her milestones (sitting up, rolling around, etc). She'll probably have some type(s) of therapy starting with in the next month 1 or more times a week. It will be great for her to have someone come and work with her, but it means that I have appointments for 5 different evaluations in the next 2 weeks (along with already scheduled ENT & allergist appointments).

-And she still doesn't really eat. But we now think that some of that is probably due to the adenoid issue, so hopefully we'll be able to move ahead with fixing the feeding stuff soon.

Upcoming Appointments
-Monday, 3/16: Developmental pediatrician evaluation & ENT
-Weds, 3/18: Physiatry evaluation & Feeding evaluation
-Mon, 3/23: Allergist
-Weds, 3/25: PT Evaluation & OT Evaluation

(For the next two weeks I'll be working on T, Th, & F to get these appointments in)

My thoughts
So it's going to be a pain to get around to all of these assessments and what not, but right now I don't feel like any of this is so terrible. She'll need a lot of practice (therapy) before she eats. She'll need a lot of practice (other therapies) to push her physical development. But she's pretty much the happiest baby around :) She's gone swimming now. She laughs a lot, which is pretty freaking cute.

Hello Toes!

Hopefully a month or two from now we'll be appointment free (other than adenoid surgery and PT/OT) and in a more reasonable pattern.

The End

So I'll try to keep this updated after appointments, and with other fun things in general. PLEASE COME HERE to get the information straight from the queen's mouth (I was going to say straight from the horse's mouth, but honestly, that clearly doesn't work here). The more that news is passed from person to person to person the more overdramatized it tends to become.