Archive for May, 2005

Update on Dad

Sunday, May 29th, 2005

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

Sunday, May 29th, 2005

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

Saturday, May 21st, 2005

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

Tuesday, May 17th, 2005

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…

Monday, May 16th, 2005

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

Saturday, May 14th, 2005

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

[The picture has been removed since this was posted]

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

Thursday, May 12th, 2005

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

Tuesday, May 10th, 2005

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…

Monday, May 9th, 2005

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

Monday, May 9th, 2005

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!!