Today we had Maya's case review. Although not surprising, it's somewhat demoralizing to go through each evaluation (5 in all) and hear that she's operating at about a 5 month level. Therapies will likely be 2-3 times a week, for a total of 6-8 sessions per week. A lot of appointments. I'm not feeling chipper, that's all I've got today.

Here are 2 parting videos, in case you're not a friend of mine on Facebook (I posted them to Facebook last week). These are great :)

Maya's swallow study, in the comfort of your home

Ever sit around, wishing that you would get to go to a swallow study? Well, thanks to Dave's quick thinking (with our digital camera) and the magic of youtube, you can attend one right now! These 4 quick videos will show you the whole thing, from beginning to end. Plus, if you're into sciency stuff, they're pretty cool.

(The results, by the way, were totally normal :) No problems with choking or aspirating her food.)

(Oh, and her pediatrician appointment Thursday went well, too. She's 20 lbs now! She went from the 25th percentile in weight to above the 50th percentile, which is quite impressive considering that she won't eat!)

Here, Dana's in the pink lead gown, along with the speech pathologist (behind the little stand thing) and a doctor (who is in the red lead gown). Dave was in the viewing booth with the technician who was snapping the pictures. The screen that Dave zooms up to at the end is where he video'd the rest of the images.



In video #2, you are looking through Maya's head, shot from her left side. So her mouth is towards the left side of your screen, with the back of her skull and esophagus to the right. For the beginning part of the video she is using her tongue to push around a tiny spoonful of peas that have some barium stuff mixed in to make them visible. Then she swallows (at about 9 seconds) and you can see the little bit go down her esophagus.



In #3, to the left, you're watching her lower jaw move up and down as she drinks from the bottle. On the right side, you periodically see the barium-laced milk go quickly down her esophagus as she swallows.



More of the same, with a little bit of hungry Maya crying in the background, and more bottle-drinking near the end.

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.

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

Giggly video

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

http://www.youtube.com/watch?v=xPEndaLyOn4

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.

Physiatry

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.

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 :)

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.)

Maya's Medical Summary & Upcoming Appointments

Background
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.

Sorry

Hello again. Have you ever put something off for a day or seven . . . then felt bad that you haven't already done whatever task it is, so you avoid it for a few more days . . . then you feel even worse for procrastinating . . . so you try to put it completely out of your head for, oh, say 2 months? That's what happened with the blog. Sorry about that.

In the past two months we've been busy. Actually, in the past week alone we've been busy. We've officially had the worst break ever (we were off this week) . . . but it seems silly to start there. So here are a few things before we get to this week:

1. Christmas was really fun. Maya got a bunch of toys :) Good times in NJ.

2. Maya's not eating, or doing a lot of the things that she "should" be doing (sitting up for extended periods without help, banging things together, etc). So we've been going through a whirlwind of different specialist visits, trying to get to the bottom of it all.

3. Because of the delays, sticking her little tongue out, and her small eyes we ended up going for genetic testing to rule out a "lesser" form of Down Syndrome (it's hard to explain---called Mosaic Down Syndrome). Thankfully, the test came back negative . . .but it was a tough 3 weeks.  I think I grew a lot as a person while waiting for the results.

Ok, now I've broken back into the blog world. Here are 2 pics from Christmas. I'll try to update about our totally awesome break later tonight or tomorrow: