March 14th, 2010 at 9:42 pm
(Day to Day, Douglas, Sabrina)
Molars look huge in a little mouth. The second set of molars are on their way in. Right now she is sitting with Heather clapping as the little Fischer Price dog finishes singing its little song about counting to ten. We are about to take her upstairs for night three in the big girl bed. The crib side has come off. Sabrina has officially been promoted to big girl status.
Speaking of big girl status; we have our first meeting with the school district at the end of this month. Sabrina will transition out of the First Steps program in the beginning of October at which point our school district takes over. It looks like a four day a week program for a few hours each day. This will coincide with Douglas starting Kindergarten. I don’t know if they are ready for this, but I am certainly not ready to send my 5 year old (6 by then) off to school, let alone my 2 year old (3 by then) off to school.
Doug is spelling, adding, subtracting, telling stories, using words that 5 year olds don’t generally know let alone use. He is working on his video game skills and tonight, rather than a story book, he had me finish a booklet I received at a Microsoft Technet presentation on the Microsoft Azure Cloud.
Sabrina seems to be gaining ground in some areas, physically she is on schedule or possibly ahead. Little kid has a grip that would make a wrestler envious, she can pound on her brother like a professional linebacker. She climbs in and out of everything (part of the reason she was promoted to big girl status). She claps, dances, mimics, she is paying attention to her stuffed animals, she seems to be playing dress up with coats and jackets. Though at this point her communications skills are still lacking. She gets a message across but some of that message comes from knowing her. No one who isn’t Heather or I will get the message. Still working on it. She is definitely listening to things… making some kind of connection with sound. Nothing will get her stop and stare like the theme song to Phineas and Ferb. She will stop whatever she is doing and listen till the song ends. Still waiting for momma and dada… eventually.
We are finally redoing the master bath. We have been planning on doing it for years and it is finally going to happen. New cabinets, counter top, fixtures and our dying shower is going to get repaired. It’s been on the to do list and other things kept coming up. We have hired our contractor, picked out the new gear now we just need to wait a few weeks for the work to start. Nothing much else to report, daylight saving time is catching up with me, and I am going to give in to the effects and go to sleep. Should be a rough morning… stupid clock change.
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November 25th, 2009 at 11:26 pm
(Autism, Day to Day, Sabrina)
Good grief, what has happened since August 23. We have gone from basic pre-word sounds to pre-words. We can recognize; more, cookie, cracker, milk, da, ma, up and a handful of others. Most importantly she has mastered “ya” as if she were born a Minnesota baby rather than Missouri. Her Grandparents must be proud. She gets so excited and does a happy dance when we understand what she is saying. Its almost as if she is wondering why it took us so long to figure out what she wants.
Therapy continues, we have a Hearing, a Global, an Occupational and now a set of Behavioral Analysis therapists. Two more visits and I will have the complete set. Lets see, we learned nothing at all from the neurologist and we are on the waiting list to get into the Knight of Columbus Development Center at Cardinal Glennon Childrens Hospital for an autism evaluation. We filled out the paperwork a few weeks ago and it can take months to get in, so we wait. We are developing some basic appropriate play, perhaps not quite age appropriate but its a start. Though if pounding on her brother was considered age appropriate we would be all caught up. She loves him so much and wants to be tackling him 24/7. Some days I think he is the center of her world… if only he would accept the adoration she would be his forever… or at least until she discovers boy bands. Instead… well, there is quite a bit of screaming and pouting.
That’s a good place to be, I need to hand the computer over for some quality time with the bill pay website. Off I go.
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August 23rd, 2009 at 3:46 pm
(Day to Day, Douglas, Sabrina)
We still have not received the genetic and metabolic test results. We have been back in for surgery. We have a new pair of hearing aids. Um… what else… We have something that resembles the beginning of word formation.
In the order listed above; We will call again this week to see if the genetic and metabolic results are back in yet. So we have not learned anything new on the possible autism side of things. We are in a holding patter on that one till we get a bit more information.
We were back in for surgery a few weeks ago but it was unrelated to the CDH. She had something to do with a urachus. This is the link between bladder and umbilical before birth and it is suppose to go away. In this case it didn’t, if not taken care of it can increase cancer risks later in life. It manifested its self in the form of a cyst on Sabrina’s belly button. So we went in and Dr. Coln took care of things. He went in through the belly button and now her belly button looks different than it did. He told us it would, and the total lack of a visible scar is a nice plus. I have said it before and I will keep on saying; That doctor is an artist.
Our hearing aids have been upgraded to a newer lighter smaller model. Based on the results of the test a few weeks ago they have turned the level on them way down. We are still seeing multiple therapists and the new global therapist seems to be working wonders. Sabrina is putting things inside other things now, for example, Legos in a box, or stuffed animals in a box, or a paci. in a box or boxes in a box. This new skill seems to be box related. We also have something that seems to represent the beginning of words. Strange as it is, we have gotten the best response with the word concrete… don’t ask why, we don’t know. She is moving right along, not as fast as I would like, but still moving.
Doug is getting ready for year two of preschool. Three days a week rather than the two we did last year. The different classrooms are split by color and there is a little bird of that color outside each room. Last year he was a blue bird, for summer school he was a purple bird and now he is a pink bird. I am not particularly in to the masculine/feminine definitions of color, but I have not quite adjusted to hearing him say he is a “pink bird”. I want him to say it with an Austin Powers accent. “I’m a pink bird, baby. Yeah, groovy.” Err… maybe its just me.
As for us, not too much has changed. We recreated the planters in front of the house with new landscaping bricks and are trying to find a reasonably priced sliding door so we can stop freezing in the kitchen in the winter. I am in the process of switching from a management job to an engineering job. I won’t miss management at all, I would rather be elbow deep in a server. Maybe in a few years I will go the management track, right now the technology is more fun. Thats about it for now. Till next time… probably next month, but who knows.
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July 9th, 2009 at 9:32 pm
(Day to Day, Hearing, Sabrina)
Well we did not get the MRI information tomorrow as expected, we got it yesterday which would be over a week later. If you want to ruin your sleep for a week, get your child a brain scan and have them tell you the information will be available tomorrow and then don’t receive any information for a week or so. I called four days in a row, not counting the holiday, and we finally got the results yesterday. Sabrina’s brain structure has formed correctly… but. See there is always a but or a however. But, there does appear to be some brain damage. We are going in Monday afternoon to see the scans and have them explained to us. The general gist of things is, there is some damage that looks like the kind of damage the neurologist sometimes sees in premature babies. The cause, in this case, can only be guessed at and the extent of the effect this will have on her is also unknown and will be unknown for some time to come. What we do know is that this may be the cause of Sabrina’s communication delays. We should know more on Monday and then in a few more weeks when the metabolic and genetic test results come back. Till then its business as usual.
We have added a new therapist to our repertoire. This time a Global Developemental Therapist. So that is one Global, one Physical, one Occupational and then our teacher from CID. Speaking of CID, we did get the results from the ABR test the day of the test. For whatever the results were worth. Sabrina seems to be hearing at a low moderate level in the ranges from 800 on up. However the ranges below 800 had no response at the highest decibel level they will go with this test which is 85 db. So about as loud as a lawn mower. What does this mean… not a clue. I expected to come out of the day at least knowing more than I went in to the day with. I didn’t expect to know less than I started with. We will need to figure out what the no response portion means over time. We did bring her hearing aids to CID and they reprogrammed them with the new information we did get. The left the lower range set where it was and brought down the volume on the higher ranges. Now if she would just keep the hearing aids in we could see what kind of results we are getting now.
That should about cover things for now. She is unsafe at any speed these days, she has learned how to climb her high chair… we are all doomed.
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June 30th, 2009 at 9:57 am
(Autism, Hearing, Sabrina)
The MRI is done, the blood draw is done and they are doing the hearing test right now plus making the ear molds. That and I am blogging from a Nintendo DSi. This handheld rocks, just don’t buy it for the camera… its pretty bad. Anyway, we are just waiting for the test to end so we can take her home. We should get the hearing results today, the MRI tomorrow and the genetics in four weeks. More later…
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June 29th, 2009 at 9:27 am
(Autism, Hearing, Sabrina)
After 8 months of working with CID we have made no real progress. Not that CID is to blame, there is no blame, just fact. When Sabrina was in the NICU one of the lead Doctors said he had never seen a child quite like Sabrina. I had mentioned long ago that they had her on a dose of narcotic that would have knocked an adult on their butt. Sabrina was awake and watching her surroundings. Our therapist from CID has said she has never worked with a child quite like Sabrina in her 20 or so years of working with hearing impared children. We have since been to a neurologist and we have indicators that put us on the autism spectrum. I am still learning what that means exactly. We do not know where on the spectrum she operates at this point so let the testing being. Tomorrow we begin bright and early at St. Johns for an MRI, a blood draw for genetics and since she will be sedated anyway we are going to do the BAER test… I think thats the correct acronym… the sedated hearing test. This should give us a map of where her hearing is right now. And to top off this cake we are doing earmolds at the same time. She hates earmolds and if we can do them while she is out, everyone will be happier. Well more on all this later. Time to start today.
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March 4th, 2009 at 9:54 pm
(Hearing, Sabrina)
Thus far she has two bottom front teeth that came in first, two top front teeth that she got for Christmas and several molars on their way in. The first one broke the surface in the last day or so. I think I would be complaining more than she is about something that size cutting through my gums. She doesn’t complain at all… or any more than usual. They do look huge in such a tiny mouth. I am pretty sure that her brother had several of the other front teeth come in before the molars, she just needs to be different.
Heather and I spent Saturday at CID. It’s a pretty amazing place. If I am understanding things correctly. They built the school with the intention of teaching children pre-K or earlier through High School graduation. They have a beautiful building with a huge gym. The thing they did not anticipate is how good they would be at mainstreaming their kids.
Now for a brief intermission… she just put my big toe in her mouth. I think she was going to try and chew on it. I am sitting on the couch with my laptop with my right leg crossed over the left making a work surface. She walked over and started pulling the screen down. I moved it away from her, she smiled at me and sent me a message. That message was, you may be able to protect your laptop Daddy, but what about your toe? You see Daddy, you can only protect so many things from me at a time and you had better choose wisely. Now don’t you think you should give me the computer.
Stinky baby.
Anyway, they have been so good at mainstreaming their kids they generally only have them for the first few years; Pre-Pre-K, Pre-K, and Kindergarten. Many of them are mainstreamed by the time they are in 1st grade. It’s a pretty impressive track record.
Now for a second intermission… Stinky baby… no, really, really stinky baby, she smells really really bad. I will be right back.
Let’s try and finish this one up. We signed in and ate a donut. It was a good donut. But that’s not why we were there, it was just a perk. The sessions started with an opening speaker, Jayna Altman. Moved on to a session about sports, followed by the choice of Financial Aid and (I forget the title), but it was about sibling relationships. We went to the second one and found out that Doug is completely normal and that we are doing basically the same things other families are doing to try and make their other children know they are special too. Lunch was next and we sat and chatted with a few other families. When one of the other dads found out I was in IT we spent most of the time talking about what to look for in a new laptop.
After lunch it was another split session of… um… something and one about safety. We went to safety. It was run by a police officer who, as he put it, was not an expert but was a paranoid parent of a hearing impaired child. Who can’t relate to that one, hearing impaired or not. We were giving quite a few things to think about. We discussed the pros and cons of having a “Deaf Child” sign or two put up in the neighborhood. We talked about marking hearing aids in case they were lost, my idea was to take them to a jeweler and have them gently engrave a phone number on them. We talked about medical alert bracelets which are very important for the cochlear implant crowd as they cannot have MRI’s done. Also, turning a medical alert bracelet into a charm bracelet was mentioned. We discussed the importance of having labels on baby seats. The hospitals here gave us CHAD tags, (Stickers for the child seat with alternate contacts of family or friends just in case there is an accident.) Usually after an accident the police will extract the entire child seat rather than just the child from the seat. They recommended having a tag that made note of the hearing impairment, not just for MRI reasons but a hearing impaired child may appear non-responsive if an accident is severe enough to knock her hearing aids out. So in addition to the normal information on a CHAD tag, making note of hearing impairment is important. We discussed registering with the local police department. Apparently they can flag our house in the 911 call system so if they ever get a call with dead air they know there is someone with a hearing impairment at this address rather than treating it as a mistake or a prank. Finally we learned important things like Tube Riders, Oaktree Products, AG Bell, Otter Box, Ear Gear, and Harris Communications. All of these links with the exception of AG Bell are shopping sites. ( I get nothing for your clicking on the links.) They are just resources we did not know about until this past weekend. Oaktree (under assistive devices) and Harris have all sorts of things from fire alarms and bed shaking wake up alarms. Portable doorbells and lighting that flashes when the phone rings, hearing aid compatable phones, etc etc. Otter box makes waterproof boxes for putting electronic devices in at the beach or pool, Ear Gear makes sleeves to protect hearing aids during sports, and Tube Riders makes nifty things you can attach to the tube between the hearing aid and the ear mold. AG Bell is a site that has a parents support section. So the safety session provided more than just safety but a sharing of information. A group of people living a shared experience sharing a bit of that experience with each other.
Ok, I checked the schedule and I got things a bit out of order, lunch was after safety and the session I couldn’t remember was about being ready for the mainstream, but that doesn’t change much. After lunch we has a session on current and new technologies and then ended with a Young Professionals Panel with three former CID students. Plus there was a young lady who came with one of the speakers for this last panel who joined in. She had gone to a different school and learned ASL as well.
CID is an oral school, they do not teach sign, but the consensus among parents was sign is also necessary. Batteries die, you can’t wear aids while swimming etc. Sign fills the gaps, and it also allows entry into a different world. Something that I learned years ago in a social studies course and was reminded of this weekend, culture is defined by a common language. ASL being a complete language also has a culture of its own. People who have a shared experience and a shared language to use to express that experience. It seems one of the requirements for entry into this community is the ability to use ASL. I have believed since we first learned Sabrina was hearing impaired that we should learn ASL and give her the option to learn it as well. I want her to have the option of being part of any community she should choose to be part of. Be it the hearing community, the deaf community, or ideally, both.
I am not sure what I left with that day. Maybe a glimpse of the start of a path that has been laid out for my daughter. A path that will take her places that I have never been, but that’s probably what this life thing is all about. I’ll be there to hold her hand along the way, carry her when needed, and push gentle in the right direction as is my right as her father. Right now I am going to go and give her a big hug and pick her up as her path for tonight leads only to bed.
1 Comment
February 20th, 2009 at 9:49 am
(CDH, Day to Day, Douglas, Hearing, Page Updates, Sabrina)
It’s been too long since updates again so here I go. Sabrina is walking all over the place. Nothing is safe anymore. We have her new hearing aids and have not had a problem with them since they arrived and yesterday she got new ear molds. As you can guess a growing child will outgrow ear molds on a regular basis. They have been lasting a few months and then new ones need to be made. Once they start getting too small we have a product called oto-firm that keeps them from feeding back till the new molds are made. The oto-firm is a cream that fills the gap between mold and ear.
We have reached one of our least favorite times of babies lives. She has started hollering when she wants something. The problem is, no one knows what she wants. At this point in communications learning, her brother would at least grunt and point. She just hollers till you get it right. While we are way in communication skills we are making progress. Shes not doing too badly for someone who has only been hearing for a few months now.
We are over 16 months out from her birth, about 14 months out of the hospital and we have no complications from the CDH. Near as we can tell, other than the external scars, her insides are working exactly as they are suppose to work. We have some issues we are still working with physical and occupational therapy plus the weekly time with the teacher from CID but these are all peripheralissues. These are issues from being in the NICU, issues from the surgery (large incision through a large section of chest muscle) and her hearing is a side effect of the machines and drugs that saved her life though we do not know specifically which machines or drugs may have done it. But for us, no other CDH issues have appeared. We go in to see the geneticist at the Children’s Hospital at the end of March to make sure there are no other hidden issues. Till then everything is peaceful (except for the hollering) and normal (for us).
Next weekend CID is having a parents seminar day. A few morning sessions and then an afternoon session/panel with past students/graduates from the school. Should be interesting. We have been a bit short on guidance and what to expect in the future. Hopefully this will provide some insight.
Doug is still four. He runs, he yells, he crashes, bangs, throws, rips, shreds, hides, tunnels, all in the living room… did I mention he yells. We have been back to the doctor for his breathing/coughing/sleeping and we are hopeful that what he has is not asthma. The doctor thinks it might be just a seasonal infection. We will keep going with the inhaler and see what happens once spring/summer set in.
Other than that, my websites have been migrated again. I started off running my own web server out of the basement… it was a bad idea. It was fun, but far too much work. Then I moved to a small hosting company run by a guy who really knew what he was doing. Then someone offered him a pile of cash and bought him out. That someone isn’t as impressive. So I have moved to a mainstream large hosting company. The link seems a tiny bit slower but it should not been noticeableunless you are running tests like I was to compare the two. So now I am with hostgator.com. Sabrina’s pictures are back up and I hope to add some new pictures this weekend. I have upgraded Doug’s site from my HTML to a gallery program. I am going to add more pictures of him and I have set up a section to upload some of the pictures he has taken with his Fisher-Price digital camera as well. Things look good with the new site so far, hopefully it stays that way.
4 Comments
December 27th, 2008 at 9:09 pm
(Douglas, Hearing, Sabrina)
I can’t believe I have not written an update in two months. I would say, We have been busy, but that would be repeating several other posts so lets just assume I was abducted by a traveling troop of mimes and just recently escaped. Actually, if anyone knows a traveling troop of mimes that is abducting, please let me know, I could use the break.
Lets start with Douglas, he may have asthma. He has spent most nights since September coughing while he sleeps. Turns out after trying several dozen different things, we took him to a specialist, tried his first suggestion which did not help. Since the testing with the specialist only has some minor indicators of asthma but nothing conclusive, we did not start with the inhaler. After the first attempt failed we called the doctor who started him on the inhaler twice a day and the coughing has ceased. The boy is getting sleep for the first time in months.
Sabrina has been a busy monkey. Physical Therapy, Occupational Therapy, Doctors appointments, RSV shots, CID appointments. Her hearing aids came in and quickly went back to the manufacturer. One of the devices would stop working after a very short period of time. So we spent a few more weeks with the loaners. We have continue to have problems with one of them since we got them back but with the holidays we have not been able to get them back in for maintenance. To add to that we have a torn tube on the ear-molds so we are using one of the molds from her first set. It is a bit small but better than nothing. The audiology departments voicemail says they are out till 2 January, so we may need to wait a while to get these problems fixed.
It’s frustrating. We are becoming dependant on these little pieces of silicon, metal and plastic and they seem to be letting us down. Makes me feel like we are letting Sabrina down, just a little bit.
She has changed. She smiles more, she laughs more, she is moments away from walking, two more teeth came in. She has had her bottom teeth for months now, the top two both came in together in the last week. She is eating everything… everything. Today she tried honey mustard pretzels. Later in the day I was having a few more and she was looking at me with an expression that said, “Where’s mine?!?”. She yells and squeals and hollers and giggles and to think how close we were to losing her. It’s been a little over a year since we brought her home. Gets more interesting every day. Here’s to the year ahead, lets see what’s next.
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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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