Archive for August, 2005

All is Still Well

Saturday, August 27th, 2005

Things are still going well here with Maria! Her vision and hearing seem to continue improving. She seems to look at us more often. Sue, the nanny, is so excited everyday because she’s doing so well. Next week we have another barium swallow to see if she’s aspirating, and a visit to the nutritionist and gastroenterologist (the one who can’t believe Maria’s drinking a bottle again).

Like Uncle Andy said, we had a real nice time with Auntie Rose and Uncle Paul. Maria is such a good vacationer (just like her mom!). I was a bit nervous on the sail boat, the wind was pretty strong and the boat was tipping quite a bit. It would’ve been a yahoo good time, but I kept thinking about what would happen with Maria if the boat tipped over.

We looked at all the MRI CDs I have – Sept and Dec ’04, Apr and Aug ’05. It’s amazing how good Maria’s brain looks now compared to last Sept. Each scan looks quite a bit better than the one before it. The last one looks normal (to an untrained eye). How many of you can say you’ve seen your daughter’s brain?

Got the report on Maria’s hearing test. Highlights: “Abnormal synchrony of the auditory pathway for both ears.” “Possibility of normal cochlear function and an auditory neuropathy.” “Interesting and unusual activity in the tone bursts that occurs very early and is quite robust.” “Appears to shift in latency as the pitch changes.” “Further investigation will be done to get a better understanding of the nature & significance of this activity.” “Cochlear implant shouldn’t be considered at this time.”

Well, we seem to be training Maria to be very vocal at night resulting in mom going to bed early so daughter can sleep. In other words, sweet as she is, I think we’re creating a monster…

Back from vacation

Wednesday, August 24th, 2005

Last Thursday Maria’s speech therapist said she’s already met all of this quarter’s goals. Pretty good considering those goals were set just two weeks ago.

Maria just got back from visiting her Auntie Rose. She went to the Festival of Sail in San Diego on Saturday, then went sailing on Uncle Paul’s boat on Sunday, and went to the Wild Animal Park on Monday. She was a perfect angel on the drive out, but a little cranky on the drive back probably from being off her schedule and out of her familiar space.

Mom’s 2 Cents Worth

Sunday, August 14th, 2005

Well, all I can say is that it’s a good thing Uncle Andy updates the blog. If it were up to me there would be fewer updates with less information because I can’t seem to find the time to write them. I even learned something from reading his last entry! I have been very happy with how Maria has been doing the past month or so. As Andy says, her vision and hearing are getting better, she’s moving more, getting stronger, drinking like a champion, making great strides! She is still a bit floppy, which I especially notice when I look at other babies… so I find it’s best if I don’t look at a lot of other babies, ya know? But floppy or not, she is still sweeter, mellower, and cuter than the other babies. And for that I will be eternally grateful.

Although yesterday was a bit of a tough day with all the testing (especially for Dad), I was and am very happy about the audiologist’s preliminary admission that Maria’s cochlea and the hairs of the cochlea appear to be fine. I didn’t think they were damaged back in January and I’m glad to hear one of the auditory people finally agree. It is a little odd about her unusual reading — you know, the one he’s never seen before in all the thousands of tests he’s done. I wish I knew what it meant. I wish HE knew what it meant. I think it will turn out to be a good thing. We do still have a steep hill to climb, but maybe they’ll quit treating her like she’s deaf now…

So anybody reading this know anything about Reiki? Do you think it will help with her building her vision, hearing, and other assorted pathways in the brain that were damaged by the fluid build-up? I’m toying with the idea of having some Reiki done with/to her, but can’t make up my mind….

Maria has 8 teeth now!! The 8th one has finally completely erupted. All the better to bite you with, my dear. Her hair is getting long, but still not long enough to put all of it in 1 ponytail. Soonish we’ll be getting her 1 year photos done — hopefully before she’s 2…

Very good week

Friday, August 12th, 2005

Phew! It’s the end of a very busy but very positive week for Maria. This will probably be a long one, so get comfortable.

Back in January she got a BAER (Brainstem Auditory Evoked Response) test which showed that her ears were working, but her brain wasn’t getting the signals. This can indicated a problem with the auditory nerve (auditory neuropathy — AN) or with parts of the brain itself (auditory processing disorder — APD). The recommendation was to try her on hearing aids with the eventual goal of a cochlear implant. An oversimplified description of the implant is that it’s a sophisticated hearing aid, most of which is implanted directly into her skull. However, drawbacks include the fact that it is major surgery, it destroys any residual hearing in that ear, and although it has had the best success with auditory neuropathy it still very often fails to help the patient. The problem is that doctors right now really don’t understand either AN or APD so aren’t sure how to treat them.

For the past few months we’ve struggled with hearing aids, and you can imagine how hard it is to keep them on a 13-month-old baby particularly now that she is getting better at deliberately pulling them out. At first, I thought she could hear _differently_ with them, but I couldn’t see if she heard _better_ or not. She’d get quite fussy in loud environments like a restaurant and we’d have to take them out. In addition, though her hearing was bad before, it got MUCH better very abruptly back around March and has stayed quite good. More recently, we can’t really see a difference in her reactions either with or without the hearing aids. She hears fairly well, but we don’t know how well she discriminates what she is hearing. A good metaphor for these kinds of disorders would be dyslexia. A dyslexic can see the letters but can’t make sense of them. Someone with these types of hearing impariments can hear sound, but the sounds are so distorted they may not be able to tell what they are hearing.

Unfortunately, as we have complained about before here, all of the people involved with her hearing impariment have been…well, insert your own profanity here. They have been condescending and unhelpful and never believed us when we would say that Maria’s hearing was better. Heck, they didn’t believe when she said her first hearing aids didn’t work! I mean I can see being in denial about her hearing, but what possible purpose would it serve to lie about the hearing aids??? However, to be fair, their experience is with more typical forms of deafness that doesn’t improve and they just don’t seem to understand that AN/APD do sometimes get better as a baby’s brain develops and repairs the damage. From my point of view, they are basically treating her for a now-invalid diagnosis so it is hard to take their opinions too seriously.

This week, Maria went through a number of tests to evaluate whether or not she was a good candidate for a cochlear implant. When this idea was first brought up in January/February, I could see the benefit of it. However since then, since Maria has improved, I’ve turned against the idea. Cathy has probably always been against it. We aren’t closed-minded about it. We are willing to be convinced to do this, but we need to see that it really is the best choice for Maria and not just a “well, we don’t know what else to do, so let’s do surgery” thing.

Tuesday she had her speech evaluation. A speech therapist (not her usual one but a new one) examined Maria and talked to us about what kinds of sounds Maria makes and responds to. Although she didn’t score as well as a typical 13-month-old, she has made a lot of advances recently that are very encouraging. Her babbling continues to increase in complexity and she discovers new and interesting sounds all the time. There have been several times she has used words that _seem_ to be in context (milk, more, up, bye-bye, mom) but they tend to be things she’ll do one time and never again. On average, she seemed to score about in the 6-to-9 month range. The therapist said that she was on the fence about whether to recommend the implant. She was the first of the people involved with Maria’s hearing who seemed to understand that AN/APD can get better and can be erratic as her hearing changes from day to day…or minute to minute. She was encouraged particularly that Maria is making progress and clearly has some significant hearing.

Thursday she had her appointment with her normal speech therapist. The developments there weren’t hearing/language related. During the hour appointment, Maria did some amazing things. She rolled belly to back using only her trunk muscles, not her arms. Then using this newfound ability while on her belly with her arm trapped under her body, she rolled off her arm, pulled it out, and rolled back. Shortly after, she rolled from back to belly unassisted for the first time (she actually “fell off” the pad onto the carpet, and the little 3/4″ elevation change obviously helped her complete the roll, but it still showed her it can be done). And, with some assistance from the therapist on balance, she pushed herself up to a sitting position. There were several other less obvious feats in the way she moves and holds her body. She hasn’t done any of these things since (except the back-to-belly which she did off a pillow onto the floor) but her movements continue to get more coordinated and more directed. The vision therapist thinks that as her head control has improved her visual field has become steadier. This has allowed her brain to start processing images better. As her vision improves, she has more incentive to move to grab a toy or to roll because she’s more aware things are happening. This, in turn, leads to better vision and so on. Yesterday and today we all commented on how she seems to be seeing people at longer distance (10-20 feet). Three times she has looked at my face and smiled, which she’s never done before. There are many more visual and physical things that are new. She is on this incredibly fast track to development and we are very excited.

Today was the long day of the long week. She had an MRI, CT scan, and another BAER test, all under general anesthesia. We haven’t heard the results of the first two, though we don’t expect anything earth-shaking from them. They were mostly just to map out the area of the surgery to see if there was any strange geography for the surgeon to be aware of. The doctor who interpreted the BAER was the head audiologist. He hasn’t worked with Maria before and we were very glad that he was the one involved because he has a very good reputation. He said her BAER is still abnormal. There is still little to no brainstem response to sound. However, unlike the others, he doesn’t dismiss our claims that she hears. He said he has had a couple of patients whose BAER tells him they should be completely deaf, then he goes out and has a normal conversation with them and they can clearly hear just fine. It goes along with the idea that they don’t really understand these conditions yet. He also said that her cochlear microphonic (the part of the test that shows whether her ears are responding to sound) was “the biggest response I’ve ever seen in my career and I have no idea what it means”.

The most important thing is that his recommendation is that we adopt a wait-and-see attitude, do another BAER in 6-8 months, and see how she develops. No surgery. He still thinks we should use the hearing aids, but feels we should keep the volume very low like they have been. This is pretty much what we thought we should do. OK, we’d like to dump the hearing aids, but they aren’t making things worse so we’ll keep using them.

So what could have been a stressful and demoralizing week has turned into a very positive one. Maria continues to be the miracle baby and we hope to have more good news soon.

Still doing well

Friday, August 5th, 2005

Maria’s therapists are all thrilled at her rolling over trick. They’ve also noticed that she is suddenly using her body much better. She moves her trunk more carefully and maturely rather than just flopping her big ol’ head around and letting her body get dragged along. She can roll from back to tummy with just a little guidance. She also has started getting into that knees-and-elbows pre-crawling position and will take weight on her legs if we hold her in a standing position. I’ve also noticed that her vision seems to be improving lately, which is good because it had gotten quite poor for a while. It’s like the vision improvement and the sudden burst of motor skills development are related, though it’s hard to tell which affects which. I had assumed improved vision was giving her incentive to move. However one of the therapists pointed out that recent studies show that body positioning affects brain function which in her case would affect vision, so maybe this new body movement is triggering an improvement to her vision.

She’s had some kind of weird intermittent diarrhea this week. She’s fine in the morning but as the day progresses her poopies get softer and more liquid until they get pretty disgusting. It sounds like a food reaction, but we haven’t narrowed it down. Yesterday we kept her on the BRAT diet (Bananas, Rice cereal, Apples, and Toast, though she doesn’t eat toast yet) which is supposed to be good for diarrhea, and she didn’t have any problems. Yesterday was also a bad drinking day for her which we would normally have shrugged off, but with the diarrhea she needs to be sure and get her liquids. She drank best for Papa (6 oz in one sitting) while Cathy and I and even the speech therapist couldn’t get her to take more than 2-3 oz at a time.

There are a few more pictures on the website.