Update on Dad

How could I forget -- there's news on Maria's dad! His interview with immigration is June 9th, so he could possibly be here in a couple weeks! Maybe he'll be here by her birthday, after all. Won't that be great?! Keep your fingers crossed...

Family & Pool

My dad and step-mom were here last weekend. Maria seemed to like Grandpa Dick. How do I know? She kept grabbing his shirt and sticking her face in his armpit. So cute! Grandma Ida held her some also and constantly marveled at how many cool things Maria has.

Auntie Rose came the day before Grandpa and Grandma left. She made us a beautiful photo album to document Maria's 1st year and how it all started ("It all began with a trip to Greece... ."). She did it online with ofoto, which is at www.kodakgallery.com. Now we'll be expecting one every year!! She also made some more prints of Maria's feet when she was asleep -- they're so much bigger than they were 6 months ago or so (duh). Maria slept through the night all week, so we'll see how she does now that Auntie Rose isn't here to show off for. Before our visit, Maria has been thinking it's cute to talk/yell/complain? until about 1am. Cute...

Yesterday Maria had her first dip in the pool!!! Her Phoenix "Grandparents" (my friends) put her flotation swim suit on on top of a diaper and a swim diaper -- she looked like the blueberry girl in Willy Wonka -- just laying there on the floor with her arms and legs sticking out, dangling in the air. It was so cute!! She loved the water. We couldn't get her to splash just yet, maybe next time. Her Grandpa Joe pulled her around on her back and her tummy and in a floaty lounge thing. So today when I gave her a bath in her tiny little bathtub, I could tell she was disappointed and wanted to swim.

Maria's upper right tooth has finally really popped through her gums. It's been trying for a while! Her Grandma Anne discovered how sharp her teeth are yesterday. She's still doing great with eating her solids and she still sucks at sucking. Seems like Sue, her nanny, is the only one that can get her to drink much from her sippy cup. Next Friday and Monday are her upper GI and endoscopy thing, so we'll maybe find out more about why she won't drink. stay tuned...

More Hearing and Feeding

Wednesday I realized that Maria's hearing aids weren't actually, you know, working. One made no sound and the other would cut in and out. So I fiddled with them and figured out the M/T switches appear to be the problem. I set them both to the middle setting and they started working. But I wonder what the downside of the middle setting is (like shorter battery life since it's also doing the telecoil?). We called the audiologist and she said next time we come in she'd check them. I kinda wish they'd been checked before they were put in...

Cathy and I have been a little disappointed with the current feeding therapist. There's no sense of long-term goals or milestones like the other therapies. She just fiddles with her every week. So Cathy met with another one this week. She's supposed to be the best in the city, and Cathy really liked her. She does TAMO therapy, which is "a new therapy approach to neurologic and orthopedic movement disorders based on current dynamic theories" per the TAMO website. Since the physical and occupational therapists also use TAMO, it seems like it should integrate better into her overall treatment.

Maria's scheduled for her upper GI on Friday the 3rd, and her EGD Monday the 6th. Or possibly the other way around.

Dad and Ida arrived yesterday, just in time for brief heat wave which is supposed to peak at 111° tomorrow. They leave in a couple of days. Rosanne arrives tomorrow and will stay a week.

You know, I just realized that Maria posted the "We're watching you..." post below. Pretty good for an 11-month old.

Tummy Trouble

Just got back from the gastroenterologist. Cathy and I both like him. He's personable, doesn't have that "better than you" vibe some doctors have, and was willing to spend plenty of time with us explaining everything in detail. One might even say "excruciating detail" :)

Based on Maria's symptoms, he doesn't think it's a physical problem such as reflux. He thinks it's more likely that it is <sigh> something neurological. Usually I just roll my eyes when doctors say that because they are always so quick to jump to neurological problems (or shunt failure) every time Maria scratches her nose. But in this case, he wasn't judging her by the hydrocephalus, he was talking about the typical profile for an 11-month-old with feeding problems. He thinks she is simply having trouble coordinating the swallow reflex, which is an absurdly complex interplay of muscles.

He's going to order an EGD (put a camera down her throat to look at her esophagus and stomach to see if there is irritation) and an upper GI series (she drink barium then they do x-rays to see the structure of her digestive system) just to rule out physical causes. If those don't show anything, then it's just a matter of working with the feeding therapist to train her how to drink...which is kind of what we've been doing for months.

He also discussed the possibility that Maria's future might include a G-tube, where they actually make a small incision in her abdomen and put the feeding tube directly into her stomach. The NG tube she's using now (which goes in her nose, down her throat, and into the stomach) has problems such as it makes it even harder for her to swallow, increases her risk of sinus infection, is easy for her to pull out (accidentally or on purpose), and interferes with her physical development. For example, we haven't been able to give her good tummy-time sessions in months which is further delaying the whole pushing up->crawling thing. Cathy and I have had a while to get used to the idea as it has been mentioned by various doctors and therapists over the past few months. At first our reaction was, "No way!" but we have started to see the advantage. It probably wouldn't happen for a couple of months, so the little scamp still has time to stop messing around and start drinking her milk like a big girl.

We're watching you...

Popped in real quick to add a counter on the sidebar so we can keep track of the throngs of people coming by to read about the cutest baby in the world.

Maria's hearing aids are proving to be frustrating. They keep falling out, are supposed to be cleaned every day, should be put in their special holding chambers at night (which wick away moisture). That's all Cathy needs -- several MORE things to do every night before putting her to bed. But you want to know the really "funny" thing? The audiologist had them set wrong! One setting is M for microphone, which is normal operation. Another is T, which is telecoil, which is a special setting that uses some kind of induction thing to make talking on the phone easier. Then there is M/T which is, I suppose, both. The audiologist told us to be sure that they were always set on M. But when Cathy looked at them after a couple of days, she realized that NEITHER of them was on M. We foolishly assumed the audiologist had set them when she put them in so we never checked them. *sigh* Really gives you faith in their level of competence.

The good news is that we finally have an appointment with the gastroenterologist tomorrow morning. We really need to get a handle on this feeding thing.

Hearing aids

Maria got her hearing aids today (click on the picture for a larger version).



The blue string isn't part of it. It just ties the hearing aids to her clothes so that when they inevitably fall out we don't lose them. Her ears are so small they won't stay on very well so at the audiologist's recommendation Cathy is using toupee tape to keep them on.

There wasn't any dramatic change when they turned them on but I didn't really expect there to be. They won't do a new hearing test for a couple of weeks, I assume to let her brain get used to the new inputs. This will be a simple hearing test, not like the big one back in January. That one required them to knock her out and it tested both ear function and brain stem response.

The audiologist and the hearing therapist have both been terribly skeptical of Cathy's and my assertion that Maria is hearing dramatically better than before. I guess they get a lot of people in heavy denial, but I'm fascinated how these people who see her for five minutes every three months think they know her better than we do. So Cathy's going to try getting another "big" test scheduled to prove to these people that she can hear better. It doesn't mean "problem solved" but at least it shows improvement and might change her therapy program.

Speaking of therapy, the milk thing continues to be frustrating. The speech therapist won't commit to any kind of long term program without the supervision of a gastroenterologist. We still can't get in to see one. Cathy got a call yesterday at 9 for a 10 o'clock cancellation (it takes 45 minutes to get down there). She would have struggled to make it, but she had to go in to work. So we keep waiting and Maria keeps not drinking. I've really grown to hate that NG tube.

Cathy seems to have found a good nanny. She's worked with MS kids before so isn't bothered by all the medical stuff. She has kids and grandkids of her own, including twin grandsons just about Maria's age. She's also much more optimistic about Maria's development level than, well, everyone else. The doctors just talk about what's wrong. Even the therapists, who are much more positive than the doctors, still focus on her weaknesses and not her strengths because that's their job. It gets easy to lose sight of the positive things.

Maria's fourth tooth has popped through just today. We're hoping that will make her less fussy. She's definitely going through another yelling stage.

Nanny Update

Isn't Maria talented?? (Mom's Name Day present). Her Phoenix grandma (Anne) helped a little bit.

I met Sue today. She's the mother of a friend of a friend. She has 2 kids in their 20s and twin grandsons who are 3 weeks younger than Maria. She fell in love with Maria the moment she met her (duh). She used to take care of a baby with MS, does hospice work, was a LPN in Hawaii for many years. So we're going to give it a try starting tomorrow. I hope it works out.

I have a new project at work. We're working on a broadcast about Cooperating Agencies, which airs May 24 in all BLM offices, and it's a bucket load of work, so it will be nice to have a little relief (for Uncle Andy, as well). Good thing, too, because the nanny agency has come up dry; and the other potential candidate hasn't gotten back to me.

The feeding therapist today wasn't super helpful. Everyone's waiting for our appt with the gastroenterologist to see if reflux and it's associated pain is responsible for her disinterest in milk. June 22 is the appt, but we're on the waiting list for an Urgent appt. Good thing it's not really serious, since we've been on the list for 2 wks+...

Mommie's Day Present

Here is the present Maria made for Cathy for, as Manolis calls it, "Mom's Name Day" (name days are very big in Greece).

Maria sneezed her tube out again this evening. We thought about leaving it out overnight, since I watch her again tomorrow, but she's short on milk today and was short yesterday, so we put it back in again. We really need to get a handle on this feeding thing so we can get this silly thing out of her nose.

Maria's definitely got a fourth tooth ready to erupt. This has made her extra fussy, but it should pop through in a day or two and then she'll be fine.

One bit of good news is that it looks like Cathy has three strong nanny candidates: one through the agency, one a friend of a friend, and one through some internet searching. Surely ONE of them should work out.

Maria gave Cathy a nice little Mothers Day present (with the help of some friends of hers). I got a picture of it but I'm too darn lazy to get it off the camera today. I'll post it tomorrow.

Mother's Day

My first Mother's Day as Maria's mom (last year she was in my belly). She was very huggy today, and chatty. We took a walk, did a little shopping, I bought her some clothes because she's growing out of everything. She was yelling a little bit this afternoon. I hope it's just a short phase she's going through. Friday night she yelled from 9pm when I put her to bed until about 1:30am -- she's never done that before! I think it's her way of crying??? Her upper right tooth looks like it might be getting ready to come out, so maybe that's what's up? Maria sneezed out her feeding tube this evening, so I took advantage of it by giving her some tummy time. She's had the tube in 6 1/2 wks this time, taking nothing by bottle, and barely taking any milk by cup. I fed her tilapia, asparagus, andcereal w/banana and milk for dinner -- she ate a lot! So hopefully she'll sleep through the night and won't wake up because she's hungry (short of milk). I meet a potential nanny Wednesday, so keep your fingers crossed!!

New tooth

Maria's cutting her third tooth (upper left front). It popped through just yesterday and right now it's just a dot of white on her gumline.

One of her latest things is that she keeps trying to sit up. If I lay her down or put her in her swing, she leans forward like she's doing crunches. If I let her grab my hands she can pull herself up to a sitting position. She can't sit unassisted yet, but she's getting better at that. Another thing she's doing a lot lately is grabbing stuff with both hands. I'm not sure where that fits on the development scale, but it seems to give her more control. Yesterday she absolutely would not let me feed her unless she was holding the spoon (in both hands of course). It's wonderful that she wants to help, but it does kind of slow things down :)

We've started feeding her small pieces of fruit to get her used to chewing. She's done well with banana and papaya. She had her first pieces of advocado last night but obviously didn't like them. That's a little weird since she loves mashed advocado, but I guess the new texture was just too much for her. I've also tried letting her take the pieces and put them in her mouth, but that hasn't worked so well yet. They are just too small for good control, and she usually just mashes them in her hand. But we'll keep trying.

Welcome to Maria's Blog

I've created this blog with the hope that it will be a better way to keep everyone updated on how Maria is doing. In particular, the goal is for more frequent updates, particuarly for the extended family/friends network who don't talk to me and Cathy as often. This first one will be a lengthy one since it's been so long since we've updated everyone.

She still has the feeding tube in. She pretty much refuses to take milk at all. We've been experimenting with sippy cups and straws (under the care of yet another feeding therapist) and having some luck with that. We've pretty much given up on the bottle since she's not that far from weaning at this point anyhow. We're trying to get her in to see a gastroenterologist since it seems that something is going on in her tummy. She was on Zantac for a while but that made things much worse (more spitting up, more fussing) and when we quit she got better. She's still good with solids and is getting better at sucking the food off the spoon instead of us shoveling it in. With the tube in, she's getting her hydration and calories and she's over 21 pounds now. The feeding thing has been pretty much dominating our time.

This is further complicated by the fact that the nanny Cathy hired quit. Cathy mentioned that she (the nanny) was having some problems with her pregnancy. Well her doctor told her she had to quit working right away, so she quit with several hours notice. The nanny agency has sent out two more candidates: a young girl who was obviously uncomfortable with handling a special needs baby, and a woman with quite a bit of experience who kept flaking out on showing up for the interview and the "test day" where she spends the day taking care of Maria while Cathy is there to observe. I think we're pretty open-minded on nannies, but "showing up" is kind of an important quality! So the search continues.

Unfortunately the nanny quit right at a time that Cathy was getting hammered at work, I was getting hammered at work, taxes were coming due (I had to do mine, Mom's, and Mom's estate this year), and so on. So April was a fun month.

She had an MRI last week, and everything is still perfect. The biggest news is that, as of a couple weeks ago, something really seemed to click in her brain and her vision and hearing dramatically improved. She reacts to sound more. She looks at things when touching them instead of looking away. That's a classic symptom of cortical vision impariment: they look away from an object before reaching out for it because their brains just can't handle all the information. She also looks at faces more -- another symptom of CVI is that faces are too complicated for them to handle so they tend to look away. She loves to watch me talk and while I do she reaches out and grabs my lips and cheeks trying to figure out these noises I'm making. She's babbling more. She quit clearly says the words "Mom", "Mommy" and "No". Now the practical side of me has to mention that she doesn't actually use them in context (like saying "Mommy" when she sees Cathy) but the proud uncle in me quickly dismisses that.

Her tactile sense is better. She loves to be scratched, especially under the tape holding tube in. Unfortunately she seems to have figured out the whole "if it itches, scratch it" thing so frequently scratches at the tape. She is also fascinated by vibrating toys, whereas before she was pretty indifferent to them.

Her physical development is still lagging. She is nearly ready to turn over; we've been saying that since, what, Thanksgiving? But this time for sure...

She had really bad sinus congestion for a couple of months that were never were able to figure out. The problem was that we couldn't put her down on her tummy because her sinuses would fill up instantly and she'd fuss. Now that the congestion is gone, we STILL can't put her on her tummy for long because she rubs her itchy face against the blanket, and I'm pretty sure it upsets her stomach more. She spits up more on her stomach. So that's put another monkey wrench in the physical development. Cathy and I mostly work on helping her with sitting up.

She still sees her many therapists. I think we are up to five now: physical, occupational, speech (feeding), hearing, and vision. One of the state agencies involved with this program has a proposal out that would pretty much gut the program. All kids would be limited to one therapy session a week no matter what. So rather than getting five hours with five specialists every week, she'd get one hour with one persion trying to do all five therapies. Um, yeah. That'll work. Cathy's rather miffed. She went to a meeting about it and is preparing to write a letter to the agency pointing out what a crock the idea is.

Manolis keeps moving slowly through the immigration bureaucracy. He should be here within a couple of months -- that's another one we've been saying since Thanksgiving. Last I heard, he just got a whole bunch of forms to fill out that are duplicates of stuff he's already filled out! Gotta love those feds. Silly me, I feel that fathers should be allowed to visit their kids. Especially the ones with severe medical problems.

Dad & Ida are coming out later this month and Rosanne's arranged to come out at the same time so that'll be nice.

I'm sure I'm leaving out big chunks of information, but this is a good start. My hope is that I can update this a couple times a week; we'll see what really happens :)