May 29th, 2010 at 1:26 am
(Day to Day)
I really should be sleeping right now, though I found myself hanging around Facebook after finishing Lost Planet on my Xbox and now I have lost an hour. Not really sure where that one went. Though I wasted four hours this morning looking for why something didn’t work properly at work. Turns out everything was working, except for the fact that a nasty thunderstorm got in the way of some emails. Four hours and I get to blame rain. Could be worse, I could still be there digging through log files.
Whats new. Preschool is out for the year. Doug starts summer school at the Elementery School in about a week. I think he is ready for it. I can’t say I am. Sabrina has traded out therapists. We traded an ABA for a speech/language specialist. A few words might be nice, perhaps mama, dada or even Could someone get me a cookie and milk… now! We have become pretty good at translating what she is looking for but words would be easier. She carries on, what seem to be, entire conversations without saying a recognizable word. But you can tell by the way she says it, the body language, the inflection, that she is saying something. Pretty nifty to watch. Next big step, everyones favorite college level course, Potty 101: Intro to the Potty. She’s interested, but I think she just likes flushing.
Well, thats a good quick update. Time to sleep.
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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.
2 Comments
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.
1 Comment
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.
1 Comment
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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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
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 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 6th, 2008 at 8:35 pm
(Day to Day, Page Updates)
Been a while since I updated. Every time I go to write a post I end up working on the server. Updates, patches, general fidgeting with things. Well no more. I have signed on with Hosting Puppy and all my server administration worries are behind me… ok, some of my administration worries are behind me. Several parts of this page are still broken, they will need to wait till later.
The girl is smiley and doing great, the boy is… three.
1 Comment