October 19th, 2008 at 8:49 pm
(Hearing, Sabrina)
Lets see if I can quickly summarize the last week or so. We had our meeting with First Steps and the therapist from CID. We have been approved for assistance from the state of Missouri through First Steps. This paved the way for Sabrina to get her hearing aids on Wednesday. We have a loaner set of aids for now and CID has ordered her own set.
We went in on Wednesday, they checked her ears and checked the molds they made for her ear inserts. Then they took out the set of loaner aids and programmed them with the information from her first visit a few weeks ago. They put the first hearing aid in and turned it on. The look on her face is beyond my ability to describe. I am hoping its one of those moments that stays with me for the rest of my life. She stopped and just… I can’t really describe it. She… ok, I can’t describe it. It was like a connection was made, like something entirely new happened. We know she was hearing things before, but like things suddenly changed and she didn’t quite know what to make of it. They put in the other hearing aid and we went back into the test booth. Before she was hearing somewhere around 60 decibels. Now we are probably hearing at around 20 decibels. These are all rough guesses as we are dealing with a baby, but they seem to be accurate.
We then sat down with our therapist. She walked us through care and feeding of the aids and sent us home witha box-o-stuff. Turns out there are several dozen things that need to be done each day to prepare the aids to go in and to put them away for the evening. These devices are high tech and being high tech one of the simplest combinations of elements can be the death of them. That combination being H2O. We have two different drying/dehumidifying things. One is basically silica gel that can be microwaved to dry it out after several uses so it can be used over and over again. It changes color as it gets damp so we know when to microwave it back to dryness. The other plugs in and drys/dehumidifies. It has a brick of sorts that needs to be changed every few weeks and a UV light to act as a disinfectant. We have a battery tester, a small stethoscope type thing, several other bottles and containers and air puffers and extra batteries and extra brick things and battery cases and and a CID shoulder pack and a book and… I’m sure I am missing several things. We have definitely entered a whole new world here with a rather impressive learning curve.
Now we are home with her. We have been able to get both aids in but the left one doesn’t seem to fit correctly. It gets a feedback loop whenever we put it in. The right one seems to work and fit great. From speaking to the therapist while she is now over a year old, her first hearing day is really Thursday. So everything that a baby would start learning the day they were born about associating sounds with concepts Sabrina started learning on Thursday. So technically Thursday October 16th was hearing day one.
Since then she has done a pretty good job of leaving the hearing aids alone. She pulls them out periodically, she fights us most of the time as we try and put them in, but what would you expect from a 13 month old. We have been trying to put both of the ears on but we are more likely to just put in the right one as we are having the fitting problem with the left one. We had called the therapist Thursday afternoon and again on Friday to ask about the problem but had not heard back. So we figure one aid working properly is better than putting in the other one and having it squeal at her half the day.
So that’s where we are. Behind the curve as usual but right now she has her ears out since her bath and is happily chewing on her pacifier while making ya ya ya sounds. Nothing better than that.
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October 6th, 2008 at 9:54 am
(Hearing, Sabrina)
I didn’t realize I had not posted in two weeks. Things have been busy. Sabrina has been going to physical therapy for sitting/crawling issues. She refused to spend any time on her stomach and would not sit up for more than a few seconds at a time. We are about six weeks into therapy (once a week) and she had learned to sit up on her own. She does not get to the sitting position in any way that I have ever seen a baby get to the sitting position, but she does it. I almost think its more graceful that the normal way kids sit up. Or I might be bias.
Quite a bit has happened on the hearing front. I contacted CID (Central Institute for the Deaf) here in St. Louis. The coordinator for the 0-3′s was incredible. After all the experiences with doctors and nurses, we encountered a few people who genuinely seemed to care about our child and what we had to say. Most, not so much. The CID coordinator took an interest, took my information and we had things rolling faster than I would have ever imagined. I have become use to waiting weeks for anything to get accomplished. CID put us in touch with Missouri First Steps. Our First Steps coordinator has been incredible, I was prepared to gird my loins for battle and there I was standing in my armor with no battle to fight. She picked up the ball and ran with it. I could not have asked for a better experience. She came out to the house and got the paperwork set up, we got in with CID last week for another booth hearing exam. (More on that in a minute.) She also pushed to get our appointment moved up, we were scheduled for two weeks from now but we were able to get in on a cancellation early
We walked into CID last week, we were greeted in the parking lot by a staff member who was going to her car. Apparently we looked like noobs and she stopped and gave us directions to where we needed to go. I suspect that fact that we parked in the visitor parking and probably looked lost had something to do with it. I sat in the lobby, after checking in, feeling like I was going to a job interview. Not entirely sure what I was nervous about… only Sabrina’s entire future I suppose.
Once again I was sceptical about the exam. We had been through two of these tests, the first being a wash with some indications of a problem, and the second not being much better but definitely pointing to a problem. The ladies at CID were excellent. They worked their way through the test as best they could with a cooperative/uncooperative 11 month old. The results from the first two tests were shown to be accurate and they had a sense of the degree of loss. In the lower ranges she can probably hear around 50 db on up and the higher ranges we are looking at 70 db on up. So moderate to serious hearing loss. We sat and discussed the results and our options. It felt good being treated like a partner in the solution rather than some poor clueless schmuck who happened to roll into the hospital looking for help. Not to say St. Johns audiology was bad, it just wasn’t this good. We started discussing the future and appointments, found out our First Steps coordinator was already moving towards an all hands meeting with the school, the therapist, herself and us, all in the same room at the same time. The kind of meeting we always wanted with the hospital before Sabrina was born but never got.
We even took ear molds for hearing aids. Assuming the approval goes through at the meeting on the 13th, Sabrina will have her hearing aids next week. We never would have even dreamed of that before. We were figuring, the BAER test next week, a few more weeks for the next appointment and then a few more weeks for the hearing aids. We also canceled the BAER/ABR test. The ladies at CID are confident in their results and said we could go ahead with the BAER if we wanted to but it was not a requirement to move forward. This kid has been through enough and she does not need to spend any more time sedated. She slept through enough. I gleefully canceled the test. We can always reschedule it later if we need to. It is no longer a necessity to move forward. We did set up an appointment later in the month with ENT so we have a specialist on board for ear infections or any other issues.
So to recap, big meeting next Monday followed by a big day with the hearing aid fitting. But before that Happy Birthday Sabrina this Friday. Year one is almost through.
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September 17th, 2008 at 5:47 pm
(Hearing, Sabrina)
Back in January I spoke of my concerns for Sabrina’s hearing. I felt she was not hearing everything and was told by others that she was being a NICU baby and tuning out. My concerns had not diminished since then and since no one would agree with me I figured I was wrong. I wasn’t.
After pushing the issue we brought her to St. Johns for a test last week. This would be the day that tooth number two decided to start its push for daylight. So we had an unhappy baby who did not feel much like cooperating with an audio-visual test. The tech told us the test was inconclusive and asked us to schedule a second test. If that test did not work we would need to schedule a Auditory Brain-stem Response (ABR) test. We went in for the second test today. While it did not go perfectly, we learned from the Tympanometry test that her ear drums are responding normally, so there is no fluid in the way or an infection. The auditory-visual test was not perfect but when the tech came out of the booth she said she was feeling that Sabrina was not able to hear below 70 decibels. She confirmed the opinion when she noticed the previous tech had written a note in Sabrinas chart saying while the first test was inconclusive, she felt that Sabrina was not hearing below 70 decibels.
Two qualified techs reaching the same conclusion separately seems to be a valid answer. We have scheduled her for the ABR test in four weeks but I am not willing to wait four weeks doing nothing. We have a call in to Sabrina’s doctor, and I spoke to the nurse and explained our position on this. She has called St. Johns to try and get the test moved up. We have also asked for the next step, is there a social worker or organization we should contact. Thanks to my previous manager who’s wife works with hearing impaired children we have a contact name and number at St. Josephs Institute for the Deaf. I have not called her yet, Heather and I are taking a day to get our heads together before moving forward, this gives our pediatricians office time to see what they can do for us as well. More updates later.
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August 31st, 2008 at 4:33 pm
(Gallery, Sabrina)
Sabrina’s website has been updated. New pictures from June, July and August have been added. We are a bit over one month away from her first birthday. We have reached a point that was beyond our sight twelve months ago. She is happy, she is healthy… we have some issues, but we are working on them. Can’t ask for anything more.
2 Comments
August 23rd, 2008 at 2:42 pm
(Day to Day, Heather, Sabrina)
I figure with a dad like me, Sabrina will eventually need therapy… I just figured it would be later in life… this is a bit early. Oh, Heather tells me its not that type of therapy. We have been going to a physical therapist and an occupational/speech therapy team. The physical therapist is in hopes of getting her core muscles and arms stronger so she will crawl and her ribs will drop and open properly. The occupational/speech team is for some feeding issue. I am told she has a thrust reflex in her eating which is causing problems with adjusting to the more solid foods. I have been to the physical appointments with Heather and Heather has gone to the feeding appointment. Since starting with the physical therapist we are already seeing some positive results and Heathers exercise ball is seeing more use than a giant toy for the boy. Ok, that’s not quite right, she does use it, just not as much as Douglas plays with it.
Speaking on therapy, Heather and I both left the first appointment feeling like the worst parents on the block. Feeling like, what else could we have done wrong and would we ever get past CDH. With two weeks of hind sight I can say that it had nothing to do with us as parents or our skills, it has everything to do with learning as you go. So, that being said, if you have a CDH baby and you have developmental concerns, do not listen to your second cousin’s aunt who says that her college roommate’s brother’s sister’s uncle never crawled, so that’s normal. Take your baby to your doctor and get her evaluated. The earlier you catch these things the easier they are to fix.
She is still a happy go lucky baby unless she’s hungry or as we learned recently she isn’t quite so happy with the addition of tooth number one. Of course, it would need to appear the weekend she had a nasty cold too. Poor kid, couldn’t win for anything that weekend. Other than that she is kicking everything in sight, if its kick-able she has probably kicked it. I suppose its a better hobby than chewing the furniture.
Douglas starts preschool in two weeks… I suspect he is ready, but I’m not. I am not sure how I will adjust to him being under someone else’s care… he, on the other hand, will probably be just fine. Heather has finished her first dance class in 10 years and had a ball… no, not ballroom dancing. I am running my first 5k just before the boy starts preschool, and the family received notice from the Medical Examiners office of New York City this week that more 9/11 remains have been identified.
That really about rounds things out for now. The good, the bad… well you know the rest.
1 Comment
June 8th, 2008 at 12:24 am
(Page Updates, Sabrina)
I have added pictures of Sabrina from 22 March through mid May. I bought a new Sony camera today so we will see if that prompts more photos and more updates. I only took about 70 pictures today. I will need to sort through them. I have a stack of photos to add for Douglas as well, though it’s getting late. They will need to wait till later. I need to stand up the gallery for his site before any more updates there.
Today she added rolling to her snow plowing. She did the first full roll I have seen her do… hell, I haven’t seen her roll over in weeks. She rolled from back to front to back and then proceeded to snow plow till she reached her brothers toys. This was at least her second attempt to reach his toys today. The roll was the interesting addition to her mobility. Pretty impressive.
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June 5th, 2008 at 10:04 pm
(Day to Day)
Heather calls it snow plowing. I feel that is a good description when she lays on her back, kicks her legs and moves around. Now I don’t mean a few inches here and then a bit of a turn. I mean, she is half way across the room in the blink of an eye. Pushing with her legs and plowing snow with her head, grinning the whole way. She has mastered raising her head getting up on her hands, she has mastered pushing her behind up with her legs, she has even combined the two on occasion with both hands and knees down… now if that pesky head would just join in we would have a crawling baby. We are eating baby food plus a bottle once a day with bottles for all her other meals. Eating is perhaps a strong word, I like to call it “Time to paint the baby”. Her face is a lovely canvas for banana and green bean. Carrots on her shirt are terribly lovely. Though you should see her with chocolate ice cream. Kid knows what she likes.
Douglas is in swimming lessons. He was a bit reluctant to start but now he is kicking and splashing with the best of them. Otherwise we fixed an air conditioner today and had the exterminator out to spray for the spring. The party just keeps on rolling. 
At least it was just an air conditioner repair and not a complete replacement and preventive spraying not emergency termite invasion spraying.
I just finished sorting pictures from the camera, I should be posting them tomorrow or Saturday. I still need to stand up the gallery software for Douglas’ site, I haven’t shown my web presence much love lately. I will try and remedy that this weekend.
1 Comment
May 8th, 2008 at 9:11 pm
(Day to Day, Sabrina)
Last post was quite a bit further back that I remember it being. Somehow, two months have slid on by. Kids have been busy, work has been busy. Douglas has grown into a little man. He asked me the other night why Sabrina was not around when he was little, I told him she had not been born yet. He asked if she was in mommies belly back then. I told him no not really. He then asked when she got packed in there. That’s my boy.
Sabrina has grown to around 15 lbs. now. She was 14lbs 7oz. back in mid April, so we must be around 15 now, shes in the 20th percentile, a bit small but still on the chart. She rolls around but not really over. Most of her motor-skills revolve around her pacifier. She’s like a ninja with that thing. She is eating baby food, she hates all oatmeal style baby cereals. Its hard to blame her, they taste terrible. She has been off all medication for months now without looking back. She has been to see both her doctor and her surgeon in the last month. Both are amazed by her progress which leads into our story for tonight.
Harry Potter was called the boy who lived. Sabrina can be called the girl who lived. We learned in the last few months that she was not expected to survive. We have been told she had one of the worth cases of hypertension they NICU had ever seen and that they expected her to still be in the hospital at her 6 month mark, not visiting her pediatricians office for her 6 month birthday check-up. They expected her to take most of the equipment she was on home with her. They expected her to never come home at all. She came home.
2 Comments
March 16th, 2008 at 3:41 pm
(Page Updates, Sabrina)
I have just finished migrating Sabrina’s Gallery to the new gallery software called Coppermine. I also added four days worth of pictures from 23 February through 15 March.
Heather is under the impression that Sabrina is not so much rolling over as attempting to retrieve her pacifier and the rolling over is purely accidental. Personally, I think she proved she could do it so the pressure is off, she is on vacation this week and will move on to rocket science now that she has completed rolling over. One of us is more likely to be correct… I think it’s me.
3 Comments
March 15th, 2008 at 11:21 pm
(Douglas, Sabrina)
We have just passed the 5 month mark a few days ago. She rolled over for the first time the evening of her 5 month birthday. She has rolled over one other time since then, but I missed that one… and the first two. She will only show her mom how to roll over. That or she hasn’t quite figured it out yet and the first three times were accidents. She tried sweet peas for the first time yesterday, she was not terribly impressed. They are green and mushy… though I must admit they taste pretty good… err… or so I would assume. Really, it’s not like I sampled the cats food.
I have new pictures that I have uploaded and hope to get posted tomorrow. I am working on standing up a real gallery rather than my quick and dirty HTML page.
In other news… the boy is potty trained. Yay us. I was starting to think it was never going to happen, but he got ambitious and got his act together. He has been diaper free for over two days now with no accidents. Now to work on the baby… Hey, Sabrina… wanna watch Elmo’s Potty Time…
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