Archive for June, 2005

Birthday Party!!

Monday, June 27th, 2005

We had a lovely birthday party for Maria today at her Phx grandparents house. It was a nice small group – Grandma Anne and Grandpa Joe, of course, Maria and I, Uncle Andy, Auntie Kim and her two boys. Maria and the boys stayed in the pool quite a while. Maria’s getting used to the pool and is liking it more.

After swimming, her Grandpa Joe fed her jello and fruit dip (cream cheese and marshmallow whip) and some kiwi (not so crazy about the kiwi, loved the jello!). Lots of sweets for a kid who usually eats avocados, asparagus, squash, and salmon. Keaton helped her blow out the candles, then she had her required bite of chocolate cake. She seemed to like it ok, but not as much as her mom… (she was probably wishing she had something like parsnips and sweet potatoes).

By this time, she was exhausted, but still we had presents. She got lots of nice things. I’m not sure if her favorite was the electric orange bathing suit or the large princess pillow. The dresses were pretty nice, too.

The worst thing about the day is that her dad couldn’t make it. He’s still trying to get out of Athens.

The best thing about the day (or one of the best) is that she had 24 oz of milk today — all from a bottle!!!! She hasn’t done that since, wow, probably February or maybe even November, who knows. She had 3 5oz bottles, 2 4oz, and just now she drank an ounce. I think she heard me talk to the gastro doc about talking to a surgeon about getting the G tube put in her stomach. Or it could be that I’m giving her 1/2 organic cow milk and 1/2 organic rice milk with 1T of thickener (thinner than honey, thicker than nectar) and she likes it better than my milk or the formula. Whatever it is, I’ll take it!!

Happy Birthday, Part 2

Friday, June 24th, 2005

Well I kinda figured it was an anomaly — we tried the bottle again tonight and it probably took half an hour or more to get barely 1 oz. Oh well…

But, believe it or not, we had a little rain storm tonight, so I took Maria out into the warm rain and she loved it! The rain made her smile, it was so cute! Nice way to end her birthday.

Got an email from the lawyers we hired to get Manolis’ visa. They said they’d call immigration in Athens. Heck, if I’d known that, I would’ve contacted them a week or two ago. I hope they can do something.

Happy 1st Birthday!!

Thursday, June 23rd, 2005

Maria Rose is 1 year old today!!! It’s only 4pm and she’s already done two amazing things. This morning she rolled over from her tummy to her back without any help! First time, I think. Her second amazing feat was she drank 4 1/2 oz of cow/soy milk from a bottle in about 10-15 minutes!!

If you don’t know Maria, you don’t know how great this is. She hasn’t had a bottle in months and it usually takes from 15-30 min for her to drink 2 oz from an open cup. So imagine my excitement when she did so well today!

She pulled the NG tube out again yesterday afternoon, so we decided to give her some time without it. I think I’ll keep it out all day since it’s her birthday and I’m going to keep it out Sunday because that’s her party, so maybe we’ll keep it out for the few days in between. Keep your fingers crossed that the bottle thing wasn’t just a one-trick pony trick. or something…

Anyway, Happy Birthday Maria, maybe we’ll have steak and lobster for dinner (she had cod and peas for lunch, that’s almost the same thing). haha

And immigration in Athens and the courts in Crete are still screwing around, so consequently, still no Manolis.

Father’s Day

Monday, June 20th, 2005

Today is Father’s Day, but alas no father is here yet. Maria was being very chatty this morning, so we called Manolis and as soon as she heard his voice, she was quiet as a mouse. I think she was listening for bits of wisdom. As soon as we hung up, she started talking again. Funny!

Yesterday Uncle Andy and I took Maria swimming again at her Phoenix grandparents’ pool. She did really well! Much improved over last week. She wasn’t as nervous about being in the water, she floated alone, moved her legs a little bit, splashed a little bit with her arms. The best part, however, was when Andy held her in the water on the steps, so her feet were touching and I think it made her feel more stable. She was “walking” on the steps, and that’s when she was splashing with her arms. It was great — so now we know what to do.

And speaking of teeth — she’s got the 2 upper and 2 lower, and the lower left one that’s pretty much totally broken through now; but yesterday in the pool I noticed one just about to break through on the upper right, and something that looks like a tooth should be coming soon on the upper left – wow! That’s a lot of teeth all of a sudden. I’ve been frequently giving her bits of banana, un-pureed cottage cheese, and less-pureed foods, and she’s doing great with them. She hardly even gags anymore, just chews them up.

Hopefully we’ll have good news about Manolis by next Sunday…

New Pictures

Sunday, June 19th, 2005

New pictures have been posted at the Maria Website.

Daddy’s not home yet

Saturday, June 18th, 2005

Contrary to previous posts, Manolis is not here yet. There have been a couple of last-minute bureaucratic snafus that have delayed things. We still expect him to be here within the next couple of weeks. However, it’s quite likely he’ll miss her first birthday after all.

Other than that, things are pretty quiet on the Maria front. She’s making rapid progress on learning to drink from an open cup. We gave up on the bottle long ago, and Cathy and I were both pretty frustrated with the sippy cup. It was too hard to tell how much milk was going into her mouth, and it was a pretty passive process: pour milk in her mouth then wait for her to either swallow or spit it out. However, she’s an active participant in drinking from the open cup, sucking the liquid in and even trying to hold the cup. She spits out very little. The feeding therapist on Thursday was astonished at how well she was doing. It’s still a slow process (takes about a half hour to get 2 oz in) but as she learns the skills she needs it should go more quickly. So we continue to hope we can get the accursed NG tube out someday.

Now that we have hearing aids that work we are trying to figure out if they actually do anything. From what I’ve seen, she does react differently to sounds when they are in, though I can’t tell if she’s hearing better or just differently. She already seems to be outgrowing her ear molds, so we are getting more feedback from the hearing aids. Cathy’s trying to schedule another BAER (Brainstem Auditory Evoked Response) test, which is a test where they actually test ear and brainstem function to see where the hearing problem lies. We are both convinced that her brainstem response (which was basically zero on the last one) should be much better this time. Since the audiology people don’t believe anything we say, we are hoping for another “take that!” moment 🙂

We are going to take Maria swimming again this afternoon. Cathy’s friends have a pool and Maria’s gone in a couple of times. She often has fun, though she gets a little scared when her body doesn’t move like she’s expecting. We have pictures of the last two times that I’ll get around to posting someday.

I don’t think anything too exciting is scheduled in the near future. She has her one-year checkup next week, her usual many therapies, and that’s about it.

Take That! she said to the audiologist…

Thursday, June 9th, 2005

We had an appointment with the audiologist today. They tested Maria with her hearing aids and without. She reacted somewhat with the hearing aids and quite a bit without them in. As you may recall, Andy tried them about a week after we got them and found that neither one worked very well. When I called the audiologist to tell them, they didn’t really believe me. So today, they asked me if I checked to make sure the batteries are good. Yes (duh). They tested Maria to see if she had water in her ears. No (duh). Then they left the room and tested the hearing aids. The one who didn’t believe me came back in looking stunned and said – wow, you were right! You are so observant (or some condescending thing like that). Neither one of them worked. I just smiled and didn’t say anything, because it wouldn’t have been kind.

They kept them at the same volume since they’re not sure what’s going on with her. I called the pediatrician to ask her to request another hearing test where they’ll put Maria to sleep and test her brainwave reaction to sounds. The initial one she took in January showed a severe to profound hearing loss in both ears. We keep telling the hearing therapists and medical folks that her hearing isn’t that bad. They keep looking at us like we’re in denial. I think it really shocked them today when Maria reacted to the sounds w/o her hearing aids. HA! I say.

And more news on the dad front. Talked to Manolis yesterday. Although he had plane tickets for tomorrow, there’s more hoops he needs to jump through, so his immigration meeting has been postponed, hopefully just until next week. We’re still anticipating he’ll be here for Maria’s 1st b-day.

And on the drinking front: Maria’s doing good with the open cup. The feeding therapist showed us a couple more TAMO tricks yesterday. Sue, the nanny from heaven, came with to observe and learn. She’s so good with Maria!! We’re lucky to have found her…

EGD Results Are Good

Monday, June 6th, 2005

Today Maria had an esophagogastroduodenoscopy (EGD). They put her under general anesthesia and put an endoscope (a tube with a camera) down her throat to examine her esophagus, stomach, and small intestine. The procedure went fine and she tolerated the anesthesia well. The gastroenterologist said everything looked mostly normal, though he saw she had a very small hiatal hernia (basically the sphincter between the esophagus and the stomach didn’t quite close all the way around the endoscope). He wasn’t particularly concerned about that though. He took biopsies of several places to check for irritation from reflux that might be to mild to see. Cathy got a nice little report with vivid color pictures of the inside of Maria’s stomach and small intestine.

So we took her home and she was, of course, starving. So I start to gavage her (put milk down the feeding tube) and Cathy leaves on an errand. It couldn’t have been more than thirty seconds after Cathy left when Maria found a fun and exciting new way to dislodge the NG tube — she puked it out! She let loose a torrent of milk like something out of The Exorcist, and when I looked I realized a loop of the NG tube about 4 inches long was dangling out of her mouth. That meant the tube now went into her nose, out her mouth, back into her mouth, and down her throat. So I pulled the tube out and we put it back in later in the day. It is not easy being Maria.

She goes back to the gastroenterologist in July and, among other things, they’ll discuss the possibility she’ll get a G-tube (a tube inserted through an incision in her stomach wall) rather than the NG tube. However, Cathy’s started having good luck getting Maria to drink out of an open cup. We’ve given up on the bottle and Cathy was near to giving up on the sippy cup so we are glad that she seems to be doing well. We’ve tried an open cup before, but Maria was very passive. We’d pour the milk in her mouth and she might swallow or she might spit it out. Now she’s much more involved and actually sucks the liquid out of the cup. It’s a slow process but as she learns the new skills it should hopefully become faster. More important, if she can get consistent, we can take the dang feeding tube out.

Cathy’s also had good luck using a sort of fruit slurry rather than just breast milk. It’s thicker than fruit juice so there’s no risk of aspiration, but we don’t actually have to use the thickener that we still don’t completely trust. Maria’s pediatrician also said Cathy can start Maria on cow’s milk. In fact, she wants her to start her now so that when Maria comes in for her one year checkup she can see if she’s had any weird reactions to it. Of course, since Maria’s a Greek girl, Cathy wants to try goat’s milk as well, however there is apparently some heated debate about whether that’s good for babies or not.

And speaking of Greeks, Manolis (Maria’s father) has his final (we hope) interview on Thursday. He’s already made flight plans for Friday, so he might be here Friday afternoon! We have our fingers crossed.

Upper GI Test

Saturday, June 4th, 2005

Maria had her upper GI today. The short version: everything is fine.

It was kind of neat to watch. It’s a real-time xray so we could see her stomach and intestines on a TV screen. They started to pump the barium into her NG tube and we could see it spreading out like a black cloud in her stomach. It filled her stomach and quickly started to move into her small intestine. We could also see the shunt tubing. Shunts are actually painted with a substance (it might even be barium now that I think about it) that is opaque to xrays so that doctors can easily check the condition of a shunt without having to resort to CT/MRI scans.

So they kept pumping more and more barium into her. The radiologist turned her this way and that and occasionally pressed his fingers into her abdomen to move things around. He then withdrew the NG tube a few centimeters so that it was in her esophagus then the technician pumped in more barium so they could see the structure of her esophagus. Cathy and I were both standing at the head of the bed in our lead aprons, each holding one of her hands and generally trying to keep her calm. Suddenly, there is a pop and I feel wetness on my hands; this is not something you really want to happen in a hospital. Well, the technician had been pumping the barium hard into the NG tube and took her hand away from the port to hold Maria. The syringe popped out of the port and spewed barium all over Maria’s face and our hands. It was actually pretty funny. None of it got in her eyes or anything. They’d seen enough by this time so the doctor sucked out some of the barium (an advantage of the NG tube over drinking the stuff). He told us the structures were all perfect. She didn’t reflux (leak stomach contents into her esophagus) at all during the test, though that doesn’t mean she never refluxes.

Maria was, as always, a perfect sweetie. She got kind of fussy because of the speed that the barium was going in, but as soon as it was done she was her usual all smiles. She was pretty sleepy, since we had to wake her from her nap to go to this appointment, so was a bit less happy than normal but held up well. The whole thing took only about 30 minutes.

Monday she has her EGD, where they knock her out and put a camera down her throat to look for thing such as irritation of the esophagus which would indicate reflux. This is more of a big deal test. We have to be down there at 7 am and go through admitting. She’ll be there for hours because they have to give her general anesthesia, do the test, then give her time in recovery. So Cathy’s planning to give her a quiet weekend because she (actually *they*) will be pretty stressed on Monday.

In other news, her hearing aids continue to work intermittently at best. Frequently when we check them they aren’t working at all and, of course, if they dont’ work they are just ear plugs. She has definitely regained some hearing, though the audiologist doesn’t believe us and the hearing therapist was skeptical until she started to work with Maria and could see she was hearing better. This means it’s frustrating to think we might be blocking what hearing she has with defective hearing aids. Both the hearing therapist and audiologist don’t really seem to believe us that the hearing aids aren’t working. I know I’m getting pretty tired of them not believing us about stuff. Cathy sees Maria all the time so, silly me, I think she’s probably a good witness to what’s going on with her. Still, part if it is the whole hearing treatment community is built around the idea of sensoneural deafness (i.e. the ears don’t function and it doesn’t get better) and generally don’t seem to be familiar with auditory neuropathy (the ears work but the signals either don’t get to the brain or aren’t process right — in some cases auditory neuropathy gets better as damaged brain pathways are reformed).

Maria has an appointment with a new audiologist (in the same practice) on Thursday and they will check the hearing aids and test her hearing. Cathy is going to make sure they test her without the hearing aids, hoping to prove to them that Maria really has gained some hearing. If this one is as bad as the last one, she’s going to start shopping around outside of that practice.