Austin Ben Connor

New Platform

2007-03-17T07:38:00.000-04:00

I was invited to move my blog over to the local newspapers' site to become part of the Parenting Blogs.

I hope you will join me.

AustinBenConnor
(click above to be re-routed)

Happy Birthday

2007-03-16T13:49:00.000-04:00

A big Happy Birthday to my baby sisters Sharon & Barbara.

18 and legal...watch out world!

Sharon & Barbara- age 6, 1st grade

Moving

2007-03-14T14:45:00.000-04:00

Please stay tuned...I will be switching to a new platform over the next few days. Details to follow. Any questions...email me.

On Hiatus

2007-03-12T16:42:00.000-04:00

I am sick. I am on hiatus. Maybe tomorrow I will find the energy to write.

Plus my stepdad is in the hospital with pneumonia. He's getting better.

Cold, Cold and More Cold

2007-03-07T09:31:00.000-05:00

It is cold here and I mean COLD. This is not March weather....I am not sure this is even NY weather. I feel like I am in Northern Canada. Not that I have ever been to Northern Canada, but I imagine this is what it's like. The wind chills are hovering at about 20-30 below 0. This is not fun! I can only imagine my heating bill next month...much less gas for my truck. Someone tell me how the price at the tanks can rise 3 TIMES in one day.

Anyway, I met with the CPSE board for Austin yesterday. They feel additional services are not necessary right now. The lowest marks he received on his Speech and Psych tests were in adaptive behaviors (self help) skills. Toileting and dressing were holding him way back. In the month since we have had those tests, he is nearly day potty trained (YIPPEE!) and more willing to dress himself. I was truly beginning to think that he would go to kindergarten in a pull up. So the board felt that the OT can just add some self help skills to her therapy for now. I am content with that. We did also talk about attention issues. I still feel this all ties into his night time awakenings. I am going to look into having a sleep study done for him. The parent rep for the board mentioned there is a Professor at the local college studying kids, but when I called I was told the child has to have an Autism Spectrum Disorder to qualify. Oh well, at least we have a sleep center locally. Austin's ped is going to do some research also.

I am still working on scheduling an ERG for Austin. As I had said, Boston can't fit him onto their schedule until October. At that point it'll have been 17 months since the previous test. A LOT can happen to his vision in 18 months. I spoke with someone at the TS Alliance who got me information about Sick Children's in Toronto. As much as I want to see Niagara Falls, I don't want the hassle of an 8+ hour trip to Canada. Then I looked into Children's Hospital of Philadelphia. CHOP is only 4.5 hours away. They can fit him into the schedule in 2-3 months. Finally, someone in my IS Support group mentioned Morgan Stanley Children's Hospital in NYC. They can fit him into the schedule in early APRIL! They pulled the tech out of a procedure to talk to me. She is going to call me back later with a firm date.

The relief is palpable! Now I can go back to my cubicle and huddle in front of my heater for warmth.

To Be a Kid Again

2007-03-05T14:24:00.000-05:00

Mema and Bepa took Austin out to play in the snow. It was one of those days that it wasn't too frigid...meaning temps near 30 and little wind...unlike today, and tomorrow and Wednesday and Thursday. I WANT SPRING!

Snow Angels

With his snowman, er, snow bear, or cat...maybe it's a dog.

What is with the ears??

I Can See Clearly Now

2007-03-05T13:38:00.000-05:00

Well if nothing else, I can see in High Definition. I gave in, I folded, I let Jeff get a new TV. He asked if I gave in because I got sick of listening to him. And in reality, that's a big part of it. And then he goes on to say, that he may not buy one today, he doesn't want to jump into it. I almost choked on disbelief. He's been 'researching' tvs for at least a year. There is NO WAY he doesn't know everything he wants to know. We went through this a year or so ago also. At that point I put my foot down and said no HD, no LCD, no 720p or i or whatever it is. I don't see buying into technology that isn't readily available at a reasonable cost. Because I know that if we get a new tv, then we need a new receiver and then we need a new Dish DVR... not to mention all the cabling. So it's not just the expense of a tv. Now the new thing is 1080p. I just don't understand why they are putting out tvs with this function when they won't be broadcasting tv stations in 1080p for AT LEAST 6 years. I guess if we end up with a blu-ray DVD player and buy more expensive blu-ray DVDs then we will get the full benefit, but right now that is NOT happening.

So we went to one Big Box Electronics store and asked some info and got prices. The nice thing about the sales person was he explained why a LCD vs a plasma and vice versa. And also explained that 720p is really all anyone needs. So we decide to price compare and go to another Big Box Electronic store. 4 HOURS LATER, we finally had a tv and a new receiver. I am still not sure why it took 4 hours, but I do know that the twins were miserable by the end...and therefore I was miserable by the end. Oh, and we ended up woth the 1080p because it was only $100 more.

If that were all, fine, but then we had to go home and install the thing. By 8 the installation was done, but now our universal remote will not work and it won't let us re-program it. UGH!

What's done is done.

Some Help

2007-03-01T08:48:00.000-05:00

I belong to an online support group for Tuberous Sclerosis. I felt that even if Austin doesn't have TS, they have the most experience with Vigabatrin. In talking with one of the members, she felt the Director of Clinical Projects at the TS Alliance may be of some help.

The Director called me yesterday. She is going to try and help me find another place for the ERG testing...though neither of us is hopeful. It appears there is only one ophthalmologist in all of the northeast that does this test for pediatric patients.

Also, she is going to forward the genetics information onto a research at UT Houston and another researcher at University of London. Both these women are working on compiling databases of known mutations.

I'll keep you posted on anything useful we find out.

To Rachel- none of the info is reportable. Thanks for your help!

Announcements

2007-02-27T08:58:00.000-05:00

Congrats to Em on making the President's list for the fall semester. Jeff did also, which is weird because this is the frist semester he didn't get two A's. He got an A and a B. Every other semester he got two A's he didn't make it. Figure that one out. Regardless...congrats to both!

Congrats to Tom and Mandi on their engagement.

Eyes

2007-02-27T08:28:00.000-05:00

I'm a Bad Mama. Last fall I just let everything slide. I'm not sure why or if it was laziness, the insurance or the fact that I am sick of having the kids gets more and more tests. When insurance denied both the MRI and the EEG in Boston, I didn't even fight it. So as the date for an ERG approached, I let that go also.

The NYC neuro gave me hell about it last fall. That annoyed Jeff, but she's right, ESPECIALLY about the ERG. This is the test that verifies that the Vigabatrin isn't affecting his peripheral vision. Of all the tests to let slide, that is NOT the one. We have always known that there is a potential for Austin to lose his peripheral vision. We didn't like the idea, but Vigabatrin is the only drug that works for him. We chose to walk the fine line between seizure control and side effects. Once the peripheral vision is gone, it's gone...bye bye, sayonara...not coming back.

Since I have never known another child to have this problem, we've kind of pushed the thought to the back of our minds. Then NYC neuro reminded me again last Friday that I need to get it scheduled. I called the neuro-ophthalmalogist in Boston. She can't fit us in for an ERG under anesthesia until OCTOBER. They are supposed be every 6 months. His last one was done May 2006. Do the math, not only did we miss the 6 month mark, but we are blowing WAY passed the 12 month mark also, almost to 18 months. NYC neuro feels we can just get visual field testing done, but the local peds ophth said no way, no how, only an ERG will suffice. The scheduler for the Boston neuro-ophth said if the procedure could be done without anesthesia, then they can fit him in sooner. Granted the last time we had this done under anesthesia it was a nightmare, but I just can't imagine doing this to him without it. The Boston neuro-ophth said they put electrodes on the eye and send stimuli. They then test the eye's response to the stimuli and this tells them something. I'm not sure I would want to have this done without anesthesia.

Not sure what we are going to do...maybe keep the October appt and see if we can find someone local to do a cursory visual field test? I have another message in to NYC neuro. We'll see what she has to say.

Barbara posted this...

2007-02-26T10:22:00.000-05:00

well that was rly hard to do since pretty much everything i had to click on was in spanish...im having a lot of fun here its so nice i went to the beach this weekend there farm as they call it (its more like a lake house) is right on the ocean they have a pool in the back yard but right outside the fence is the beach and then the ocean it was so pretty we went swimming and when the waves come we have to dive underneath them but it was rly scary cuz a lot of people drown n the waves rushing down on u is rly creepy so i went back up to shallower water but it was beautiful and at night we sat on the beach and watched the waves in the moonlight at we watched the sun set over the moutains i have great pictures and last week we went to see arenal an active volcano and we went to the hot springs they were so nice we sat at a bar that was in the water like the bar stools were in the water i had a bahama momma it was so good today we were supposed to go on a tour of san jose but we had to move that to wednesday because there is a riot in the city today and tomorrow we are going to isla tortuga which is supposed to be really beautiful....today after school im going to souveneir shops hopefully there will be a lot of stuff cus i havent bought like nething yet....n later tonight everyone is going to this girls house for chalupas oh and last night well about 430 this morning there was an earthquake it woke me up it scared me so bad cuz i was dreaming n then the whole house shook and it woke me up and i looked around the room and i couldnt remember where i was at first but then i remembered but it was annoying because so many dogs were barking after that not only our dog but there are a lot of strays too and they wouldnt shut up....i miss everybody a lot but i gotta go ill try n write later if i can but i think this is my last day at school and i doubt i can get on here at my house cuz i cant get to my email and i dont know the address but ill see what i can do byebye

Neuro Appt

2007-02-26T08:20:00.000-05:00

Well, I think Friday's appt was the quickest ever. We were in and out within about 25 mins. She hadn't had a chance to view the EEG yet and she didn't take the time to load the MRI scans. She said she will look at them today and get back to me. She is anxious to see Connor next month and explore the TS issue further. She did decide to up Austin's Vigabatrin also. She feels that based on our experience with him and regardless of the EEG, that we should up the dose. Jeff and I are COMPLETELY FINE with that. Besides, I dreamt last night that he was having an EEG and there was spiking. Seeing as I RARELY remember my dreams, I am trusting this one.

Jeff and I went on a date Friday night and I got to sleep in on Saturday since the kids were having sleepovers. It was a nice start to a quiet weekend!

Brains

2007-02-23T09:25:00.000-05:00

I just spent the better part of an hour looking at Jeff's brain...yes he has one! And it wasn't his brain, per se, but his MRI scans from last week. The results said they were negative for his age. One thing I have learned is brains are really cool. The second thing I learned is that I don't have a clue how to read an MRI. My dad thinks I should go to school to be a radiologist. I'll try and squeeze that in in my spare time.

So I can't read the MRIs. i am hoping the NYC neuro knows what she is looking at. I am bringing them with me to the appt today. Until then, here are some pictures for you. The one on the left is with gado and the one on the right is without. I am trying to figure out what the white dots are on the edges of the brain. This is as seen from both slices.

Ben

2007-02-22T14:08:00.000-05:00

I meant to put in a story about Ben below the photo and completely forgot. Ben is our handiman and ALWAYS has to help...whether it's fixing something, or cleaning something, he is always there. He's also the mischievous one and our jokester.

Yesterday after I got home with the twins, I took the dog out. I stand on the deck right near the kitchen window. I can hear the kids, but I can't see them. I heard the junk drawer open and close. I wasn't too worried because I had removed the scissors a few weeks ago after I realized they could get to them.

I brought the dog in and started getting dinner ready. It was about then that I realized the house was REALLY quiet. I went in search of my little darlings. Austin's door was mostly shut, I knew they were watching Thomas the Tank Engine, but when I opened the door I noticed Ben shove something behind his back and flash me this dazzling smile. I guess the smile was to disguise the fact he was obviously doing something he knew he wasn't supposed to. Then I saw that Scoop (from Bob the Builder) was on his lap, belly up, with the battery compartment exposed. Then it hit me. There is still something in the drawer that Ben is very aware of! Our mini screwdrivers for changing batteries in toys.

The toy wasn't making noises like it is supposed to, so Ben decided HE was going to fix it! What are we going to do with him?!?

Mish Mash

2007-02-22T09:39:00.000-05:00

My cute Ben...but I think the safety goggles are a little tight.

Happy Birthday Karat
I can't believe he's 8 already. It seems he was just a puppy. A troublesome puppy at that. I vividly recall the day I got home from work and discovered he'd eaten the linoleum kitchen floor. And the morning I awoke to find he decided he wanted to be IN the couch instead of ON the couch and chewed into the interior. And how could I forget the day I found a 2 feet hole in my sheetrock. But for all that, he is the absolute BEST dog. I couldn't ask for a better companion for my kids. Then and now...

Genetics Results
I left a message for the doctor's office this morning. All the tests were negative 'for his age'. Not sure what that last section means but that's what they said. A huge part of me is relieved, but at the same time it's one more dead end. The geneticist WILL NOT test Connor unless Jeff had positive results. I don't want there to be something wrong with Jeff or Austin or even Connor, but I just want to put all the pieces together. I still feel his mutation MUST mean something.

Sick Boys
My twins are sick. Aunt Karen has called me three times at work already and poor Connor was just SCREAMING in the background. His ear hurts. I feel like a bad mommy for being at work. Yet another trip to the ped.

Over the Hill?
A lot of people say that turning 30 is the worst. It's that time when you feel you need to actually be an adult. I felt that way. My entire 20's I tried to pretend I was a kid playing adult. I had a hard time when my 30th rolled around. But, in the year or so since, I realize not much has actually changed. For better or worse I have settled in...that is, until I got my mail yesterday. I opened my mailbox expecting to find the usual assortment of bills, credit card offers and fliers, but this time there was something else. I saw the return address and time stopped. My first thought was the mailman had given me someone else's mail, but no indeed, my name was listed as addressee. I can only hope someone found some way to get me on their mailing list as a joke. Personally I am NOT laughing. I am much to young for this...right? Someone tell me that time hasn't shifted.

How Frustrating

2007-02-21T11:36:00.000-05:00

Jeff had a bunch of tests done Friday to look for signs of Tuberous Sclerosis (TSC) in him. We know he has the gene mutation like Austin. But he's never been fully checked for tubers.

The imaging group said his doctor would have the results Monday or Tuesday. We haven't heard anything so I just called the doctor's office. We are, of course, anxious. Come to find out, he's on vacation all week. *sigh*

I think I might call and see if another doctor can release the results.

A Hint of Spring

2007-02-21T08:22:00.000-05:00

What a pleasure to awake to temperatures of 35 this morning....and we are supposed to get to nearly 40 today. What a welcome relief from the subzero wind chills we've been having!

Barbara is doing good in Costa Rica.

My Dad is home and doing well.

Nothing else new.

Update on My Dad

2007-02-19T14:22:00.000-05:00

They found 6 blockages, one at 90%, one at 60% and 4 at 20%. They opened and put stents in the two greater blockages. The doctor feels the others will resolve with diet and quitting smoking. Here's hoping...

corrections: the 90% blockage was in the artery that runs behind the heart. They opened and stented that one. The 60% blockage is in an artery right near where a vein join. The dr did not touch this one for fear he'd cause a blockage in the vein. There was a third artery that had 5 20% blockages. Again, these were left alone to resolve by med and diet changes.

Dad is doing good and hopes to go home Tuesday.

Oops Forgot Something

2007-02-19T10:41:00.000-05:00

I forgot the funny part of my post.

Saturday night Ben and Connor were at the table eating dinner. Jeff and I were in the kitchen making our dinner, not really paying attention to them, until we heard Ben whining. We heard him say 'I am not'. Then he turns to us and says 'Connor called me dorky'. Jeff and I nearly fell over we were laughing so hard. Poor Ben just got more upset. Don't know where Connor got that from! They are only 3!

The Rest

2007-02-19T08:55:00.000-05:00

Now the rest of the weekend wrap up.

My cousin's son is still in the hospital. He had surgery to remove part of his intestines. He has Hirschsprungs Disease, which is where the intestinal tract lacks the neurons that spark the muscles to move the waste. He still isn't pooping after this latest surgery. We hope he's feeling better soon.

My niece Tiffany is off in Spain on a class trip and my sister Barbara is off in Costa Rica for a class trip. I am just the slightest bit jealous. I don't even have a passport, let alone a stamp to go in it! But I hope they are both having fun and I wish them safe journeys.

The not so good part to the weekend is that my Dad is in the hospital. He was admitted Friday night after experiencing chest pain. The doctor said there was a 50% chance that he had had a heart attack. They have scheduled a cardiac catheterization for today. The doctor thinks there is an 80% chance he will have to do some type of repair procedure after that...perhaps a stent.

Enough for today.

SUCCESS!!

2007-02-19T08:33:00.000-05:00

Lots to write about, but I wanted to share the best first.

I have been meaning to post on this subject for a week or so, but never found the time. The subject is potty training and my intense frustration with it. We have been working with Austin off and on for about 2 years. We never really got much of anywhere, even though we had some sporadic luck about 6 months ago. At Christmas I put my foot down and we started bribing with anything and everything. I talked to the his pediatrician and she just said he will when he's ready. All along I kept envisioning my boy starting kindergarten in a pull up. It took about 2 weeks but we got him pee trained. He was only occasionally having accidents.

At the twins 3 year check up in early Feb their pediatrician asked how potty training was going with the twins. I tersely replied that I'd work on the twins once I got my 4 year old trained. She didn't seem impressed that my older son still wasn't trained.

The BM was a much bigger issue. He won't tell us he has to go, he keeps telling me he's scared, we trying reasoning with him and talking it through. We told him it was 'his job'. We told him no more sleep overs at Nana and Big Papa's. We even brought his favorite special ed teacher in on the bribery. She is offering ice cream sundaes at HER house. He only gets to go to HER house when he does something extra special. I even told him I would willingly put a pull up or diaper on him just to poop, but he would NEVER tell us, just sneak off into a corner and go in his underwear. It is so much more difficult to clean up. Finally last week I had a near breakdown regarding the pooping. As I was trying to clean him up a bunch of poop fell on the bathroom floor. The horrible mother that I am gave him paper towels and made him pick up the poop and clean the floor himself!! He was NOT happy. He started to hold it so as not to upset me. I felt I had failed.

Then on Sunday...a breakthrough. We had people over for the Daytona 500. My kids were in rare form...I think someone slipped them some sugar. Chaos was reigning. Time outs were being handled out frequently. I think we pushed my neighbors baby planning back a few years.

Jeff and I knew our pizza would be arriving shortly so we were trying to clean the kitchen and clear space. The next thing I knew I looked over to see Austin going pee. Then I heard Ben say he wanted to go too. Well I am NOT going to nix that. So Ben climbs onto the big potty and Austin says he wants to sit on the potty chair. I went back to the kitchen. I knew they were playing in there by the volume level, but I was busy and let it go. A few minutes later I walked over to check on them and Austin was yelling at me to leave him alone. I had a feeling things were 'going' well. I told Jeff so. I gave it another minute and went to check on him again. And he was all excited and said he went poop. I screamed and cheered and Ben screamed and cheered and we got him cleaned up and our friends all screamed and cheered. He was so excited and so proud and he said 'Mommy I'm not scared anymore'. We called Grandma Sandey, and Nana and even Miss Nancy. They all screamed and cheered for him. I am so excited and Austin keeps asking if we are proud of him (which we are)...now I just have to pay up. I owe him an awful lot of gifts. He seems to remember EVERYTHING I have ever offered as a bribe :) I might just go broke, but if we truly have had a breakthrough, it'll be well worth every penny.

Happy Birthday

2007-02-19T08:32:00.000-05:00

Grandpa- just wanted to wish you a Happy Day!

Miss you, hope you visit this summer.

Snowy Days

2007-02-16T09:25:00.000-05:00

As much as I don't like snow, I know we are going to get it and I respect it and the danger it presents. I mean, after all, I do live in the North East. And this is our first real snowfall of the season, for us anyway, so I can't complain, BUT you'd think the plows would know what to do with it. We had plenty of warning, yet 36 hours post storm and the roads are a MESS. There is no excuse for it either. Just another example of our tax dollars hard at work.

It took Jeff over an hour to get home from the hospital. he expected another hour or two of snowblowing, but our neighbor was kind enough to do it for us.

Locally we got about 20 inches. Not the worst ever, but it is the most we have seen in a single day since Feb 14, 1914. Ironic, huh?

Poor Karat couldn't even squat. We...well Jeff...had to dig a spot in the yard for him. And he's a golden retreiver. He's not a small dog!

Here's a peek at our front yard. It could be and has been worse.

Conflicted

2007-02-16T08:32:00.000-05:00

I don't know what to make of this trip. I am glad it's over though.

First, the accommodations. No single room, well we were alone, but it's designed as a double. It was dirty, even though they had supposedly just cleaned and mopped. The paint was chipped and the ceiling had previously leaked and had plastic taped to it. And I didn't have a 'nice' lay flat chair, I had a recliner. In Boston you get single rooms, with windows into the hallway and nice chairs and clean rooms.

Second, the food. Lunch was oven crispy chicken, boiled potatoes, steamed carrots, a tossed salad, a fruit cup and coffee. Dinner was meatloaf, mashed potatoes, a rock hard dinner roll and hot tea. He's 4!!!! So they finally gave me a menu for breakfast. I ordered oatmeal, a bagel, fruit cup and choc milk. He got pancakes, cheerios, white milk and OJ. Um hello, what was the point of filling out a menu?? In Boston you just call and order whatever you want and within 30 mins it's there.

Third, the EEG. He hates getting the leads put on and off, but once they are on, he's fine. He screamed the entire time they were put on and the entire time they were taken off. My cousin could hear Austin down the hall. And I hate to physically restrain him. We met with the neuro on Wed am and I wasn't impressed. He didn't know how long we were supposed to be there. He wasn't cognizant of Austin's history. Yet, he had been the neuro to approve the stay! You would assume this meant he read the case history. Thursday morning he came in and said the EEG looked great, great sleep architecture, great daytime activity, all around great. I want to be happy, really I do, but I just have so little faith in the local hospital. He has had probably 6-7 EEGs done here. All the early ones were abnormal, which they said, but they missed the hypsarrythmia. As he got better and was seizure free, they said the recordings were normal, but, follow up EEGs in Boston were always abnormal. I know EEGs can change on an almost daily basis, but coupled with his regressions and attention issues, I really didn't expect his EEG to be completely normal. I don't know what to think. I am ordering copies of the recordings to be sent to Boston and NYC. We meet with the NYC neuro next Friday, so I should be able to get her input then.

Until then, here are a few pictures from our stay.

Lunch...he ate the fruit cup. Watching movies and playing with cars.

Our play dough houses. Good thing I am not going to be an architect like Cindy and Barbara!

Oh yeah, forgot to mention that the Looney Tunes didn't show up. They are re-scheduled for Friday. Cousin Aaron should get to see them though. He's expected to be in until Sunday or Monday. We did get to see a big Newfoundland dog named Yogi on our way out. He was just beginning his round of visits.

Fun at the Hospital

2007-02-13T12:08:00.000-05:00

My cousin's son is at the same hospital, awaiting surgery for Hirschsprung's Disease. She just called and let my Gram know that the Looney Toons characters are scheduled to be on C7 tomorrow at 11AM. I really hope they don't cancel because of the weather. This would be such a treat for Austin.

EEG and Lots of Snow

2007-02-13T11:36:00.000-05:00

Austin's EEG is scheduled to begin tomorrow morning. We need to be at the hospital at 8am. Unfortunately this will coincide with the snowstorm we are expecting. The last report I heard says 24+ inches. Considering we have only had about 7 inches so far this season, we are due...but why does it have to be tomorrow???

Another Birthday

2007-02-09T07:27:00.000-05:00

Happy Birthday Jeff....I love you more every day.

Evaluations are DONE!

2007-02-07T15:57:00.000-05:00

I can breathe a sign of relief. Austin's speech evaluation was done on Tuesday and the Psychological Evaluation was done today. It's so hard when the therapists ask what is wrong and why the eval is being done, because at first glance he is a bright little boy. But something is off...what that something is, I don't know and I don't know how to describe.

He did great yesterday for the speech part. I didn't request the speech eval, but the CPSE board did. I don't have concerns about his expressive or receptive speech, but I did have some concerns about the articulation of his speech. He can't make the /sp sound. I have tried to encourage correct pronunciation, but he just can't. There are a couple other sounds that are off a little, but no more than a typical child. At least that's my opinion. On the three areas he was tested in, he passed all three. The average range is an 85-115. For receptive speech he had a 102, for expressive he had a 114 and for articulation he had an 86. She then pointed out that only 44% of males aged 4 yrs 5 months have mastered the /sp sound. I was relieved. I wish they printed that info somewhere.

The psych eval today was MUCH longer and more difficult. If not on him, then on me. It's so hard to silently...key word, silently...sit there and not help him. He started off well, but the attention issues became quickly apparent. He has trouble staying on task. You'd think it would be if the subject matter were difficult, but they were subject and topics that I KNOW he knows. For one task he had a page of geometric shapes. Within those shapes he had to draw a specific symbol (2 parallel lines, 2 vertical lines, a plus sign or a circle, as directed). He made it through about 3 shapes and then just started scribbling all over the page. This right here is my MAIN concern about him going to kindergarten next year. 3 hours later when the test was complete, she found that once again he was in the average range. However, his adaptive skills are low (which I expected). She feels she can make a clinical judgement request to get him some special education therapy.

All these average scores are great, but now I need to find past evals and make sure he isn't dropping on those averages. That will be key.

More Birthday Wishes

2007-02-07T07:27:00.000-05:00

Happy Birthday to my Mom who turns another year older and to our IS friend Cameran who is 2 today. We hope you both have a happy, healthy year.

Happy Birthday Ben & Connor

2007-02-06T23:38:00.000-05:00

I can't believe my babies are three. I still remember the day we found out I was pregnant with twins. We were shocked, but overjoyed and we knew life would never quite be the same.

Mommy and Daddy love you boys so much. Here is our birthday tribute to you!

Make an online slide show at onetruemedia.com

How? Why?

2007-02-06T07:08:00.000-05:00

I got a call from a neighbor last night. She told me she had something bad to tell me. Of course I panic and think something has happened to someone in their family. We are all good friends. Instead she asks if I remember the Riley family. They lived 2 houses from us and directly next door to them. She says that the neighbor across the street got a call from a reporter on Monday asking about the Riley family. We googled and found this. Just got this article from another neighbor.

The Riley Family was not a normal family. We all felt there was something off. We even knew that mom was on medication and that there were signs that she wasn't treated well. But they had three little kids Kate, Michael and Julia. Julia was a few months older than Austin so we talked frequently about how they'd be in class together, etc. The neighborhood welcomed them, but we were never really comfortable with them. I vividly remember the summer of 04. My friend's family had a summer party and invited all the neighbors. My twins were only about 8 months and Austin was just about 2. The three Riley kids were there as well as a bunch of others. Michael, who was 4 at the time was jumping off the diving board repeatedly as his dad sat on the edge of the pool watching. One of the times Michael jumped and was having difficulty. I watched in horror as Michael went under three times while trying desperately to get to the edge. I finally leaned out over the pool and yanked him out of the water. Mind you I was holding one of the twins at the time. It wasn't a smart thing to do, but I truly feared for this child. The entire time, his dad sat and watched, assuring us that he had had swim lessons and he was fine. I never really felt the same about the family after that incident and a few months later they moved. The neghbors still talk about the family on occassion, but it's not fond memories.

However, I never expected this. You read stories like this all too frequently, but you never expect to have a connection to it. It leaves me asking how could anyone do this and why would they do it? I can only imagine it was his last way of controlling and dominating his wife. She may not have been the best mom, but no mom deserves this.

My prayers go out to those three little Angels and only hope they are at peace.

Day of Doctors

2007-02-05T07:35:00.000-05:00

Friday was a LONG day...all five of us had appointments scattered between 8 and 4. Add onto that, the gastro bug decided to take a second hit at me. I was NOT feeling well at all.

The morning started with a visit to Austin's local neuro. I use the term local loosely because she is actually from NYC and visits our area twice a month. She is considered Austin's secondary neuro...and that was her choice. She felt that because she had a large caseload and because she was located 3 hours away and because the Boston neuro had been in place longer, that she was comfortable with the secondary status....that is, until Friday. Austin had been on schedule for EEG's brain MRI's and ERGs every six months. We go to Boston to have this all done. Well our insurance decided to deny those visits this time around. I talked to the Boston neuro and because Austin was stable and things were going good, then he (and I) were okay with it. I even relented and said I'd do the next 24 hr EEG here at home. But this was BEFORE we started noticing the recent issues. And I think we handled the unexpected well. We managed to get a quick EEG, even if I am not altogether convinved by the results of it.

As soon as I started updated the neuro about all that has transpired since we last saw her, she freaked. She reminded me how critical it is to maintain control and to react at my intuition and to not let the scheduled six month appts slide. She stated she felt she should take over as primary and that if insurance denies out trip to Boston or even our trip to Beth Israel (her hospital) in NYC, then she can get him in down there on Medicaid. I felt chastised. Jeff was upset by her attitude towards me and that I let the ball drop. He was annoyed. And while I appreciate him wanting to 'protect my feelings'...she actually very right. I am normally 100% on top of everything and I never let the insurance company tell me no. But for a short stretch of summer and fall, I just didn't have the fight in me to deal with it. And I did let it go. Of course at that point I thought everything was great and fine...my intuition wasn't reading far enough ahead.

We decided to proceed with the 24 hour EEG scheduled locally and if there is ANY question about the reading she plans to admit Austin to Beth Israel...even if she has to use Medicaid to get him there. The problem is...I do NOT want to go to NYC with Austin by myself. While I have never really been into the city...just the thought of it scares me. It is such a bigger city than Boston.

Also, I discussed all the TS stuff with her based on the geneticists appt the other day. She was incensed that they would not test Connor. She decided then and there that she would add Connor to her caseload and take over the TS issue. This is a big deal. She takes on VERY few patients because she is only here two days a month and I don't think she has EVER taken on a child without seizures. She is an epileptologist. So it was a good and bad start to my day. She gave me lots to do to prepare for our next appt.

Our next stop was to the pediatrician for Ben and Connor's three year old check up. Ben tips the scales at 35 lbs and 37.5" and Connor, my lightweight, is 31 lbs and 37". You may think, oh that's only 4 lbs, but there is just a density difference between those two. Ben is SOLID and Connor is like puffy air. But the good news is they are healthy, perfect boys. The ped also agreed to take up the issue of TS testing with the insurance company. She will work with the NYC neuro to get everything into place.

Next up was my appt. It was supposed ot be a well visit, but since the GI bug took another hit at me we spent it ruling out other causes. By late saturday I was feeling better.

The last appointment of the day was Jeff's. After the geneticist appt the other day, we scheduled him to talk to his doctor about TS testing. While the dr admitted he didn't know all the specifics of the disease, he whole-heartedly agreed that Jeff should have a full diagnostic screening. I am waiting to hear today on whether pre-approvals were obtained so we can schedule him.

A long day, but a productive day. I feel all the doctor's are on the same level now...we are all working toward the common goal of getting seizures gone, getting Austin's development back...and making sense of the whole TS issue. FINALLY!

Geneticist

2007-02-03T22:34:00.000-05:00

Took me a few days to get around to this. It's been non-stop around here.

So I took Connor to see Dr A. He is Austin's geneticist also. I didn't expect it to amount to much this time. Connor has been to see Dr A before and he has tested for quite a bit. Nothing has been conclusive to date. From day one I have wanted to test Connor for the same TSC2 gene mutation that Austin has. Unfortunately...or fortunately, Austin's mutation is inconclusive. The 'specialists' don't know if it's a disease causing mutation. Generally a person with Tuberous Sclerosis Complex has skin findings known as ash leaf spots, as well as tubers that can be found throughout the body. Developmental delays and seizures are also associated with TSC. Austin doesn't have any of the skin findings, but does have a brain lesion. He also has the seizures and developmental delays. Jeff was determined to have the same mutation, but has no other findings. Because of this, the geneticist feels the mutation means nothing and therefore, we don't need to explore it further. However, Austin's Boston neuro and the boys' developmental pediatrician feel it does bear looking into because the affect/extent of the disease can be wide ranging. It is believed that the disease is under-diagnosed for this reason.

No matter what I say, Dr A refuses to do the test. He was supposed to meet with the boys' developmental ped to discuss this issue. I found out about a week ago that the meeting got cancelled. I suggested we re-schedule the appointment, but I was assured that Dr A had other issues to discuss...so off we went. I'll tell you that I hate geneticist appointments. It requires going to the hospital, dealing with the always full parking garage and the appointments are always 2+ hour.

We met with the genetics counselor first. She reviewed history and then mentioned two tests Dr A wanted to do... a test for Smith-Lemli-Opitz and a Genomic Microarray. I once again stated my case for the TSC test. She went and met with Dr A and then they both came in to talk to me. After examining Connor he decided not to do any testing this time. A waste of time, just as I expected. He did say though that he would be willing to do the TSC test, IF and ONLY IF, Jeff had a full diagnostic evaluation and something was found. So I have a glimmer of hope.

Although I wonder why I should be hoping to find something. It's not that I want Austin or Jeff or even Connor to have a disease. I truly don't, BUT I also don't want to ignore a test that could have long term effects on their health, or the health of grandkids. The thing with the tubers is that they can 'grow' in the body at any time. Generally the tubers are harmless, but not always. I just don't want to look back 10, 20 years from now and realize that we chose to ignore an inconclusive test.

The one positive from this appointment is that I had the chance to learn a little more about Smith-Lemli-Opitz. Although I agree that the diagnosis doesn't fit Connor, it DOES fit my cousin's son Aaron. As I read the diagnostic criteria, I truly felt I was reading Aaron's medical chart...right down to the Hirshsprung's Disease. It would be great if we managed to find something that could be causing Aaron all his troubles.

So I guess it wasn't a total waste.

From the Mouths of Babes- Take 2

2007-01-31T21:51:00.000-05:00

So I posted Austin's story earlier in the week...now it's Connor's turn.

Note- only the New Yorkers may get this...

We were driving through downtown Albany, headed to the Geneticist. You never know what you are going to see along the way. I was busy scarfing down a McD's snack wrap, when I noticed the Liberty Tax Store on the side of the road. Now if you are familiar with the store, you know that during tax season there is almost always a person dressed as Lady Liberty standing out front trying to promote the business. Well, in the case it was a large man, in a green toga, with a foam crown and torch in one hand. Connor glances at the man and yells...Hi Dinosaur! It's a darn good thing my windows were up, because he did look sort of like a stegosaurus and I wasn't sure he was the type to take kindly to that. Regardless it was too cute and it took all my willpower not to snort snack wrap out of my nose!

I'll post on the genticist tomorrow, once I get a chance to do some research.

A Peek Into Kindergarten

2007-01-31T09:21:00.000-05:00

As you all know, I have been stressing a lot over whether or not to send Austin to kindergarten next year. I am leaning towards holding him back, but I feel like the CPSE chair is going to push to place him in school with an Aide. I just don't think he's ready yet.

So one of the local elementary schools had a program last night to give parents an idea of what kindergarten is like. They went over concepts that the children should know and what is included in a typical day. Cognitively, Austin is very smart and he could excel. His trouble is taking that knowledge and making it functional...meaning using it to complete assignments. They make it clear the kids will be writing and have some reading capability at the end of the year, but Austin's fine motor is so far behind that he can't even draw a circle, much less a square. I just think it'll be too much.

After the session, I went to talk to two of the district reading teachers. They both agreed that if I had any reservations, then to keep him back. It made me feel very relieved that the professionals supported my decision. These are teachers that will be working with him. I think that extra year off will not only benefit him in his OT skills, but will give him increased maturity and self confidence. They also very kindly gave me two local pre-k programs to look into.

On another note, I had to sit there and snicker at some of the questions parents asked. Let me qualify this with the statement, that we live in a somewhat 'uppity' district. Actually, I could probably take the somewhat part out altogether! The reason we ended up in this district is because we found a great house in foreclosure and we could afford it. Given my choice, my kids would be in the district jeff and I grew up in...but I digress. If I had a dollar for each parent that asked...if my kid is gifted, what will you do for him/her....I could have bought myself a steak dinner at 677 Prime (HIGH end steakhouse in Albany). I think the principal summed it up best after the umpteenth similar question...'gifted is a term only to be applied after extensive testing, we use the word propensity towards'....slam dunk, two points for the principal, shut those moms right up. And then there is me...'what about services for the kids that need it, are they in class or pulled out.' He started to go into a spiel about not being concerned if the child needs services, it's not a direct reflection of poor rearing..or something along those lines, and I politely interrupted him and said, he's had services for 2.5 years, it was the best thing that ever happened to him. He seemed relieved that a parent was accepting of that situation. Versus, the moms unlike me...

Then there were the moms that commented on the fact the video of the k-garten class showed a boy in a wheelchair...he appeared to have cerebral palsy. At least two moms asked if he (or others like him) would 'interact' with their kids. The principal explained that all kids are mainstreamed, regardless. I could almost hear the groans. It's sad that there are still parents out their teaching their kids intolerance. Maybe I have such an issue with it because I have two kids with needs, but really, it's 2007, why do people need to continue raising kids to be intolerant. Besides this boy looked like he LOVED being part of the group and participating with his peers...why didn't the parents see that, instead of just his wheelchair. But, I suppose that is a post for another day.

Connor is off to genetics today. Not sure if it's just a discussion day or a testing day. I'll let you know. I am still pushing for the Tuberous Sclerosis testing. I am prepared to fight!

From the Mouths of Babes

2007-01-29T10:39:00.000-05:00

Had to post this once I heard it....

Austin slept over at Nana and Big Papa's on Friday night. They awoke to snow on Saturday morning. A few hours later, Nana mentioned that the salt truck was in the neighborhood. Curious, Austin asked why they put salt down. So Nana launches into a story on how the salt melts the snow, and the plow clears the snow, so it's safe for people to drive on it. Austin's response....

Does he use pepper too?

Slacker

2007-01-29T09:20:00.000-05:00

I am a major slacker lately when it comes to the blog...and my stress level is high. Work is unbelieveably busy and my next week or so is crammed with appointments and stuff.

Tues- meeting regarding kindergarten
Wed- Connor to genetics
Fri- Austin to neuro, Ben & Connor to three yr check up
Sat- PartyLite Party
Sun- B&C's b-day party and Super Bowl
Tue- Austin's speech eval and school party for Ben
Wed- B&C's 3rd b-day, my mom's b-day, Austin's psych eval, school party for Connor
Fri- Jeff's b-day
Sat- Carli's party
Following Wed- 24 hr in hospital EEG for Austin

With all this going on, I am having a hard time concentrating at work and at home. Once this is past, I hope things will quiet down for a bit. So I am apologizing now if I am absent for long periods of time....bear with me, I will catch you up on the latest.

Austin

2007-01-23T20:40:00.000-05:00

Austin's OT and I met with the school's CPSE board today to review his therapy schedule and needs. We went in asking for a speech and special education evaluation and an increase to his OT therapy. We all feel that he has started to regress again. He is very smart but he is having troubles with auditory processing and attending to tasks. He can be given an assignment and understands what he has to do, but just can't/won't do it. He also is loosing ground in his OT skills. He can copy a circle and a plus but is incapable of drawing a square. He is no where near ready to begin writing letters. He just doesn't have the fine motor control. He also is still having difficulties feeding himself. He can do okay with a fork, but just can't control a spoon well. I try and encourage proper grip, but it ends up turning into a struggle and him deciding he doesn't want to eat. He doesn't want to fail, but he also is not receptive to constructive criticism.

The chairperson of the CPSE committee agreed to increase OT services. She is also requesting a new psych and speech evaluation. We are encouraged that the results of this will lead to additional services. Even though the services will be a huge help, we still think he won't be ready for kindergarten this fall. We just don't think he has the maturity and skills to handle the increasing demands. We aren't quite sure yet what we will do...perhaps a nursery school and some home schooling. We'll have to see how the next few months unfold before we firm up our plans. But at least we have some more ideas. We'll keep you posted.

Colleges

2007-01-19T10:56:00.000-05:00

** Update: Barbara got her acceptance letter from Wentworth on Saturday!**

---------------------------
Thought I would take the time to update the family on the college hunt for Sharon and Barbara.

Sharon wants engineering...like me. She applied to SUNY Delhi and Russel Sage. RS offers a 3+2 program with RPI. She got into Delhi and Russel Sage, BUT Sage only accepted her for their math curriculum. She has decided that even though she's not happy with the math curriculum, that she REALLY wants to attend Russell Sage. There is the chance that she can try and transfer into the 3+2 program, but it may require some hard work. Personally I am just glad that I will still have a sister working at Bella Napoli. The thought of being cut off my pastries completely was scaring the heck out of me.

Barbara wants Architecture...like Cindy. She applied to SUNY Delhi, University of Hartford and Wentworth in Boston. She got into Delhi and Hartford but hasn't heard from Wentworth. She decided last week, before hearing from Hartford, that she wanted to go to Wentworth or Delhi and NOT Hartford. But, when she got her acceptance letter from Hartford yesterday, they were so happy with her grades that they accepted her into the Honors program AND gave her a $12K Presidential Scholarship, renewable yearly with a 3.0 GPA. I think she needs to re-think her plan. She still is anxiously awaiting news from Wentworth. It is a difficult program, but she loved it there.

So, Sharon has decided, but we are waiting on Barbara.

No Changes

2007-01-19T10:55:00.000-05:00

Dr R says no med changes right now. Jeff told me to tell him to come live with us and try to handle Austin's mood swings!

Guess we wait for the 24hr EEG in February.

EEG Results Are In

2007-01-18T08:00:00.000-05:00

I got a call from the peds office that the EEG results had been received and it was normal. Part of me is happy and part of me is cynical. I want to believe that it was normal, but I have so little faith in AMC's ability to complete and read an EEG that I am having a hard time accepting it. I am going to have a CD recording of the EEG sent to Boston to be re-read. I am also waiting to hear from Dr R on medication issues. I think an increase is still needed.

So I have some answers today, but not a complete picture.

Thank You Jeff

2007-01-17T11:11:00.000-05:00

Just wanted to thank my husband for passing on his extreme cross bite to the three boys. Don't complain to me Honey when they all need orthodontia in a few years!

Dr Jen also pointed out that Ben & Connor both have tight frenums (the little skin connector beween the front teeth). I actually knew this already from it's possible impact on speech development. She said we could watch it for a few years and if it's impacting their teeth it'll need to be clipped. Although from my research most kids that have a tight frenum end up 'breaking it' on their own by getting hit in the mouth. Since I have three VERY rough little boys, this is a distinct possibility :)

Dentist

2007-01-17T08:01:00.000-05:00

Austin did great yesterday. I was so surprised. Of course they have a tv right above the dentist chair so it helps take their mind off everything. He has one 'soft spot' on a molar and his front bottom teeth are slightly loose, but other than that, he did great.

And just because I am so crazy, I scheduled an appointment for the twins this morning. They happened to have a cancellation. I am a glutton for punishment. I hope they do as well as Austin. Of course they didn't have the bad dental experience to taint them like Austin did. Keep your fingers crossed for us.

Winter has finally arrived. We are in a deep freeze...below zero wind chill. I really don't enjoy this aspect of the Northeast. Here are some pics of my bushes after Monday's freezing rain. Looks pretty but really not good for the plants. And then this morning I was out with the dog and I hear this huge crack. So loud it woke the neighbors up. I know it emanated from my deck, but I didn't see anything happen. I can only assume the boards were heaving due to the extreme cold.

EEG Done, Now We Wait

2007-01-16T14:01:00.000-05:00

Despite the inclement weather yesterday and despite a call from the hospital verifying we were still coming...I was counting on this to be quick and painless as usual. Not sure what I was thinking. When we go to Boston, they lay him on a gurney and put his EEG leads in. He ALWAYS falls asleep. Well, something was different this time because he SCREAMED the entire time the poor tech was trying to put his leads on. He kept saying 'please don't put them in, please stop and please I don't want to'...well at least he was polite. That is one thing I can say for my boys, they are very polite. He even thanked her when she was done taking them out. She wasn't quite sure what to make of him.

They recorded for about an hour, maybe a little more. He slept for about half of it. They told me it would be read that afternoon, but it will take about 5 days for the report. I am hoping sooner rather than later. But at least it's done.

On today's agenda is a dentist appointment for Austin. Time to go make him hate me some more. The poor kid just doesn't get a break. He HATES the dentist!

What's In A Name

2007-01-16T13:23:00.000-05:00

Saw this on someone else's blog...thought it was cool. I have ALWAYS complained about my name and how common it is (sorry Honey...I still love you!)...part of me thinks...that's all?? Only 14062 other people?

HowManyOfMe.com

There are:
14,062
people with my name
in the U.S.A.

how/'>http://howmanyofme.com">How many have your name?

Check out how many people have your name.

I will put a real post out later...hopefully...

So Far So Good

2007-01-14T15:40:00.000-05:00

Aside from a stomach bug that my boys are sharing, we've see no additional seizure activity from Austin. We are anxious for EEG tomorrow.

Strange Coincidence

2007-01-12T08:33:00.000-05:00

As I was talking to a co-worker this morning I realized that both times Austin's seizures have returned it's been at the 14 month seizure free mark. That's kind of a weird coincidence.

Intuition

2007-01-11T17:27:00.001-05:00

It must be a mother's intuition. On our Infantile Spasms support group, we have a saying that 'if mom thinks something is wrong, it must be". It doesn't matter that the neuro thinks you are crazy, just trust your instincts.

I created panic on Monday when I left the message for Austin's OT that he wasn't ready for school. Then I went into the fact that he seemed off and that I thought an EEG was necessary. So I trudge on, work hard and get the EEG scheduled for Monday.

Well, it's a damn good thing I did. I just got a call from Jeff to tell me he was on his way home with the kids. He said as he was buckling Austin into his carseat he was almost positive that he had a seizure. This is how it happened the last time too. We had weaned Austin from the Vigabatrin in April 05. He had had a normal EEG one month prior. Within a week or so of coming off the Vigabatrin, I told Jeff something was wrong and that Austin was off. I don't know how else to describe it. Sure enough, an EEG showed he was having activity again. There were no clinical seizures at the time so the neuro urged us to leave his meds as they were and watch him. It took 6 months, but the seizures reappeared. We put him back on the Vigabatrin and he has been seizure free for 14 months. In that time we have never increased his meds and he has gained about 10 lbs. I think he is outgrowing he dose he's been on and I think there is more activity on the EEG. Of course we'll have to wait until Monday...well actually later in the week, when the report is released to know for sure.

At least I was on the ball this time and hopefully, we can increase meds and get him back under control. Thank God that Vigabatrin has always worked until now. I just need to hope it'll work again.

Intuition

2007-01-11T17:27:00.000-05:00

It must be a mother's intuition. On our Infantile Spasms support group, we have a saying that 'if mom thinks something is wrong, it must be". It doesn't matter that the neuro thinks you are crazy, just trust your instincts.

I created panic on Monday when I left the message for Austin's OT that he wasn't ready for school. Then I went into the fact that he seemed off and that I thought an EEG was necessary. So I trudge on, work hard and get the EEG scheduled for Monday.

Well, it's a damn good thing I did. I just got a call from Jeff to tell me he was on his way home with the kids. He said as he was buckling Austin into his carseat he was almost positive that he had a seizure. This is how it happened the last time too. We had weaned Austin from the Vegetarian in April 05. He had had a normal EEG one month prior. Within a week or so of coming off the Vigabatrin, I told Jeff something was wrong and that Austin was off. I don't know how else to describe it. Sure enough, an EEG showed he was having activity again. There were no clinical seizures at the time so the neuro urged us to leave his meds as they were and watch him. It took 6 months, but the seizures reappeared. We put him back on the Vigabatrin and he has been seizure free for 14 months. In that time we have never increased his meds and he has gained about 10 lbs. I think he is outgrowing he dose he's been on and I think there is more activity on the EEG. Of course we'll have to wait until Monday...well actually later in the week, when the report is released to know for sure.

At least I was on the ball this time and hopefully, we can increase meds and get him back under control. Thank God that Vigabatrin has always worked until now. I just need to hope it'll work again.

EEG Scheduled

2007-01-11T13:52:00.000-05:00

Managed to snag an opening for a canceled appt Monday. Austin will be having the EEG at 8:30 that day.

EEG planned

2007-01-11T07:58:00.000-05:00

I heard from Dr R's nurse yesterday. He'd like us to get a 2 hour EEG as soon as possible. From there if necessary we will increase meds BEFORE his 24 hour EEG in February. That should be enough time to see if the increase has been effective. If I can get everyone moving quickly we should be able to get the EEG the 24th or 25th. Then I just have to hope AMC can get it read quickly. That's the big part.

More on Austin

2007-01-10T07:06:00.000-05:00

Cindy and Amber- thank you for the comments, I will respond at the end.

It was a long night of discussions with Jeff, my MIL (A's nursery school teacher) and Nancy, his former special ed teacher. Below are some comments that both his MIL and I put together. These will be incorporated into a request for additional services and/or evaluations.

Mom & Dad's concerns-
I am unsure he is emotionally prepared for the independence of k-garten. He still needs direct support for feeding and dressing. He is not 100% potty trained and is unable to prepare to toilet on his own. Other children have picked up on these and he is occasional 'targeted' because of it. At this point when this occurs, he will just find other children to play with. It doesn't occur to him that if he just does it on his own he will be accepted by his peers as an equal.

His medical issues play into the emotional stability as well. Historically when he is having medication level issues or increased activity on his EEG it initially appears as emotional problems. He becomes clingy and needs extra support to transition through settings that would normally be easy for him. We are currently waiting on an EEG to confirm this issue and increase medications as necessary. (I have a call into Dr R in Boston to get his opinion. He has a 24 VEEG scheduled 2/14, but I am not sure I want to wait 5 weeks to make med changes. He's gained nearly 10 lbs since we put him back on Vigabatrin and we have yet to change the dosage. So even though the dosage hasn't changed, he's actually getting less med because of the increased weight. At the same time I don't want to make a med cahnge if there hasn't been a change to his EEG...this is never easy)

Another concern is his auditory processing. He tends to zone out/get lost in active settings. If there is a lot happening around him he appears to have issues concentrating on one single task. To get his attention it requires mom/teacher to get down on his level and direct his face towards yours. Then he appears to connect to you and will respond. Again this could be part of his medical findings. Brain misfiring on an EEG causes disorganization in the mind and difficulty connecting thought processes.

It is important to remember that since Austin is a September baby, and the cutoff for beginning school is December 1st, he will statistically be younger than 75% of his classmates. Based on his extensive medical history (seizures, abnormal EEG findings and brain lesion of unknown etiology) and unstable medical prognosis at this point, we are concerned about entering him into a setting where he has 2 strikes against him already. His father and I feel that with another year of maturity and educational assistance he will be in a better position to excel with less support in a traditional kindergarten setting.

MIL's concerns-
Austin can count by rote to 14 and can count objects, but only recognizes numbers 1-5. He knows the letters A, B, C, D, M, X, O. He understands the concept of same and different. He knows colors & shapes. He also appears to understand the concepts of opposites and rhyming words. (added note- last night Austin was looking at the letter W, he turned it over and said this is for McDonald's and turned it back over and said this is for Wendy's. Aside from the fact that my kids know fast food so well(!!), the fact that he understood the difference was pretty cool to me. And just a note my kids favorite McD's food is the fruit and yogurt parfait and the apples...so don't think they are living off nuggets and fries!)

My main concerns are in the areas of small muscle co-ordination and work skills. Austin can't control a pencil or marker well enough to print a letter or number or to draw anything recognizable. He doesn't color, he scribbles. When doing a worksheet he needs 1 on 1 help to complete the page.

At this point, I can't see Austin being able to handle seatwork on his own successfully in a Kindergarten setting.

Austin is social, friendly and shares well. He enjoys doing arts and crafts. He likes to be read to and can answer questions about the story.
----------

It's hard, part of me is saying look how far he has come in the two years of therapy he has received and Nancy reminded me of this. She started working with him shortly after his 2nd birthday and he was virtually non-verbal and had zero play skills. So these concerns are pretty minimal considering.

My biggest problem right now is that I don't know what options are available. My first thought is I would love it if Nisky offered a pre-K program. I think this would be the ideal solution. They do offer an extended day k-garten and/or teacher aide for identified kids. These are great but it doesn't change the fact that he will be statistically younger than 75% of his classmates based on his birthday.

They used to offer a pre-1st program 20 years ago, but I am not sure they still do. I am slightly against two years of k-garten because I don't want him to have the stigma of 'being held back'. Yes I realize I am talking about 5 and 6 year old kids, but if his 4 and 5 year classmates can make fun of him for still wearing a pull up, a 6 yr old will make fun of him for being held back. Plus if he waits a year, he will be in class with Carly, our neighbor. She is a smart cookie and I think she'd be a built in support system for him.

So we are taking steps, but I just don't know where they are going to lead us at this point. Our lives up until now have taken the road less traveled, but we are beating a path and trying hard to find our way. We'll get there...the journey is far from over.

Panic

2007-01-09T14:03:00.000-05:00

I have created panic and chaos...I didn't mean to! The other day we got Austin's kindergarten registration paperwork in the mail. Jeff and I have been talking and thinking about holding him off a year. At the same time the school district is hvaing a meeting for kids transitioning from CPSE to CSE (committee on preschool ed to comm. of school ed). So I called the Office for Support Services and explained and asked what I should do...where do I go from here...etc. She told me that if we have concerns about him not being ready, then we need to have a meeting with the CPSE to discuss his case. But that the therapist and I each needed to get something in writing to her by Friday to get him on January's schedule.

At this point he would only turn 5 days before school started, so he'd be one of the youngest in his class. Is it fair to start him when he's already behind when perhaps holding him off a year would make a big difference? Our concerns include fine motor, social emotional and auditory processing. I think his cognitive is okay. I do have some minor speech concerns, mostly with articulation and fluency. We are also concerned that med levels may need to be adjusted. He's been off for the last few months. Hard to pinpoint exactly why and how, but the last time I had this feeling, the result was not good.

So, I called his OT and left her a message, explaining our concerns and that we were thinking about holding him back a year. She freaked! First off this poor woman only sees him for 30 mins a week and she's not intimately aware of his full medical history. Well the OT called Ms. Nancy, Austin's old special ed teacher and a WONDERFUL woman. They talked and then the OT called me today. She said it NEVER crossed her mind that we wouldn't send him to kindergarten. She reminded me that if Austin still qualifies for services that once he tranfers to CSE, he MUST get those services in the district. This would be fine except he spends his days out of district. And then add onto that, if he doesn't qualify for CSE services then we have to try and get him covered under section 504 of the Vocational Rehabilitation Act. To do that he must meet one of 12 disability criteria and I am not 100% positive that Epilepsy alone would qualify him. Plus these services would only be available in the kindergarten setting. Do I want him to missa full year of potential services??

So now I don't know what to do. Am I over reacting...does he need a full eval including psych all over...is he ready for kindergarten with just some support? I don't know. I think I need to call Ms. Nancy myself. She has always been very good with Austin and still visits him even though she is no longer paid to. Perhaps she can visit him this week and give me some insight. Part of me wants a full eval again...just to get a new baseline. Part of me says I am opening a can of worms.

I guess I will have to wait and see how this plays out.

New Daddy

2007-01-08T13:54:00.000-05:00

No not us....

Just want to send a congrats to my friend Ryan from college. He and his wife are the proud parents of a beautiful baby girl, Haley, born 1/2/07. Congrats, best wishes, and life will never be the same.

Date Check

2007-01-08T09:05:00.000-05:00

This is January right??

Sat January 6th it was 71 degrees in Albany, NY.

Not that I am complaining, mind you...but it's almost surreal.

Of course on Sunday night when they shut the power down for 6 hours, the 40's felt mighty chilly.

Wow...

2007-01-05T09:20:00.000-05:00

Got the following from my boss in an email yesterday. This was in response to a year end summary of one aspect of my job.
-----
Big Job! Thanks for the good work and dedication. I appreciate it and I know the engineers in the group really appreciate the job you do.
----

It's actually praise. I nearly fell out of my rolling desk chair. It only took 8 years to get praise from him. Now if only I could get a raise to go along with it...I know, I know...I just want EVERYTHING!

Finally

2007-01-04T13:31:00.000-05:00

I think I finally found some free time to post. It's been a long few weeks around here.

My kids had a GI bug the weekend before Christmas. I thought I escaped unscathed. I was VERY wrong. The stomach upset started on Friday. I managed to make it through Saturday and most of Sunday. New Year's Eve is our Anniversary and we always make dinner plans. I mustered up the energy to get dressed. I survived dinner and made it to the neighbor's for the Midnight toast. I was in bed by 1am when the GI bug hit full force. Thank God for family because I didn't move again for over 36 full hours. Not sure what I would have done if I had to take care of the kids also. By Tuesday afternoon, I felt semi-human and on Wednesday I made it to work. The only positive is that I managed to lose 8 lbs. Not a recommended weight loss program, but at least something good resulted from all that sick!

Despite this, I had a great Anniversary. Jeff and I have made it to 8 years. They have been long and sometimes rough with all the kids' troubles, but I thank Jeff for being so strong. No matter who was down, the other was there to bring them up. We made it through this together and the kids are doing pretty darn good. And although we said we weren't exchanging gifts, he bought me a beautiful pair of princess cut diamond studs....because I am a Princess! Hey, I have to get some perk for all the testosterone I deal with on a daily basis :)

So, although I am a few days late...I hope you all have a Happy, Healthy 2007!

Connor on New Year's Eve Day. I just don't understand what happens to my kids' hair while they sleep! Kids Stuff on Sirius has a song called 'My Hair had a Party Last Night". That is TRULY the only way to describe Ben & Connor's hair!

Jeff and I at dinner; the whole gang...Dean & Judy, in laws, Jeff & I and Kelli & Eric

Nadene & Jason; Becca, Cindy, Lindsay & Barbara

What in the world is this...see what happens when I leave my camera unattended at a party? I had a picture of someone's feet and this? I suppose it's better than the pictures of the urinals that people took with the table cameras at our wedding?!?

I'm ALIVE!

2007-01-03T10:09:00.000-05:00

I am back among the living, breathing members of society and will do my best to get a post up sometime today.

To my faithful visitors, thanks for checking in with me daily...I promise to be better about this posting business! :)

HAPPY NEW YEAR!!

Forever Friends

2006-12-29T10:04:00.000-05:00

Yesterday was a great day. A group of friends and sorority sisters all got together. This is the first time in years that we have all managed to be in the same place, at the same time, with all our kids and our hubbies. It was a great day. We, too, have a blog, but it's not the same as actually being together.

Love you girls! College and life would never be the same had you not been there beside me. Whether good, bad or mischeivous times...they were great!

(cw)Me, Connor, Ben, Katie, Austin, Tim, Sam, Elana, Max, Nik, baby Katie, Cindy & Jessa
Jeff and the boys have some quiet time

Katie, Kevin & Jessa and Me getting my baby girl fix

Too much to do and too little time

2006-12-29T07:48:00.000-05:00

I had a nice post all writeen on Wednesday and then my server crashed. Let me get a quick update on here for all my faithful visitors.

Saturday we had Christmas with the Rems, then we had dinner at Kelli's. Sunday we had Christmas with my dad's family. Monday we had Christmas morning with the in-laws then off to my mom's house. Needless to say it was a hectic few days. The kids got way too many toys, and had to de-tox, but they seem to be doing better now.

I hope you all had great holidays. Here are some pictures from the weekend.

Connor, Carli, Allison, Ben & Austin

Cowboy Connor and Cheerleader Austin...glad I passed something onto my boy!

They had fun playing with Carli and Allison's dress up stuff...all except Ben who wanted NOTHING to do with it! Yet he thought the tea set we got for Ashely was 'cute'. Actually his exact phrasing was 'that's so cute!", but he refused to have tea with her.

Ben with Big Papa and my three boys with their new hats...Jimmie Johnson, Bob the Builder and Thomas the Tank Engine.

My BIL Eric with our very full Christmas tree and reindeer Elmo.

Merry Christmas

2006-12-23T23:23:00.000-05:00

First, I'd like to take a moment to wish all my visitors a very Merry Christmas. I hope you and yours have a safe, joyous day.

Second, I wanted to share the best Christmas present I think I have ever received. A good friend of mine from college served in Iraq over a year ago. While he was overseas, I had the chance to email live with him on a few occasions. During one of our talks he mentioned that his squadron was flying flags during missions. He asked if our family would like a flag flown for us. I, of course, jumped at the chance for a piece of history that would show my strong support for our troops. Now whether you support the war or not, I feel it is vital to always support our troops who are doing their job to protect and ensure a safe future for our children and grandkids.

Tom has been home from Iraq for a little over a year and left the Corp about a year ago. I admit I had kind of forgotten about the flag. Well, today I arrived home to find Priority package in my mailbox. Imagine my surprise when I opened it and found our flag and a certificate stating it was flown for our family by VMFA(AW)-224 Fighting Bengals on June 30, 2005.

I am so excited to own a piece of history and to know it was tied to my friend Tom. Tom, if you are reading this, thank you so much...not only for the flag but for serving our country! Love ya!!

Yes I know I have some work to do on folding, but I will get the fold right and get it in a shadow box to protect it. Then I just need to find a proper place to display it.

We have a busy few days ahead, but I will be sure to post an update of our holidays when I can.

Merry Christmas everyone!

Donate Blood

2006-12-21T11:53:00.000-05:00

I gave blood today...have you given recently?

You never know who's life you could be saving.

A Sweet Respite

2006-12-20T13:10:00.001-05:00

I think I finally have found some time to write a post. Generally the end of my work year is kind of slow and most of the engineers are out for the Holidays, but this year, we keep getting hit left and right with work. By the end of the day I am exhausted and the last thing I want to do is go home and get back on the computer.

Last weekend Jeff helped his brother install a laminate floor at his girlfriend's new house while the g-friend and I went shopping. It wasn't supposed to work out that way, but at least my shopping partner was more enthusiastic then Jeff would have been. Sunday Jeff and I went to Melodies of Christmas. If you are local and have never been...GO! It's for a great cause (Albany Medical Center's Pediatric Cancer and Blood Disorder Center) and all the performers are fabulous. We had a great time and it helped put me in a festive Holiday mood...of course that mood was squashed as soon as Monday rolled around :)

Monday I got to go to Connor's pre-school for a cookie decorating party. I have only been in the classroom one other time and that was his first day of class. It was strange to see him interacting with his peers (and not just his brothers). He is 6-12 months younger than most of the other kids, but he seems to be doing really well. His OT in particular was commenting on how great it was to have him in her group sessions. They work with a lot of food activities...making and eating different tastes and textures and she said what a great role model Connor is because he will try just about everything. I truly don't know where that kid puts all his food...he's such a skinny boy....certainly doesn't get that from me :) But the cookie decorating was a really fun, if messy, experience. Poor Connor didn't want me to leave though. He thought that since I was at school then I was taking him home...he keeping saying 'don't like work, Mommy no work'. Poor kid! I also just got his IEP report in the mail and he's doing great!

Ben also just got a report card. He is also in a class with kids that are 6-12 months older than him. His Mema had a space in her 3's class and invited him to join in. As you can see below (click on the photo to enlarge) he is doing fabulous! And the areas that he is not doing so well in are really tasks that are beyond him at this point, so we are not in the least worried.

I will have to wait until I get home tonight to see Austin's report card, but I am guessing he is doing well also. AND, he's trying really hard with the potty lately. The doctor's keep telling me this is separate from all his other issues, but it is so frustrating. For the longest while he just had no desire, but the past week or two he has really been trying. Of course we keep using the fact that Santa is watching him. I guess we'll have to switch over to the Easter Bunny soon!

We have plans to see the Trans-Siberian Orchestra Friday...dinner with my brother in law's girlfriend's family on Saturday and then my dad's family on Sunday and then my in laws and my mom's family on Monday. It's going to be busy.

Well, I guess that's all...in case I don't get back on here...I hope everyone has a great Holiday...be it Hanukkah or Christmas or Kwanzaa. If you are traveling...be safe!

Jen

P.S. Great news...Sarah should be headed home today...click on the link to her site at left.

PARTY TIME!!!

2006-12-15T11:26:00.000-05:00

After 6 years of eager anticipation...the president of our company is FINALLY retiring. Aside from the 'ethical' differences I have had with him over the years, he's old and just doesn't have the mental ability to help our company move forward into the next generation. We have been bought out by a UK based company, who is well know for their skill and business acumen. We have also learned they are GREAT to their employees. So much better than the Christmas bonuses we didn't receive this year!!

Have a drink for me in celebration!

Could You? Would You?

2006-12-14T14:02:00.000-05:00

I know I said I need to stop reading the news...and I found a fair number of reasons to yell at MSNBC today, but I also came across this.

The Hualapai Indians in Arizona are building a Skywalk. A 70 foot cantilevered glass bottom walkway overhanging the Grand Canyon, with a 'view' of the Colorado River 4000 feet below.

The engineer in me is excited and amazed by the prospect, but the mom in me says no way, no how. I am a thrill seeker. I am a roller coaster junkie and I am not afraid of heights, but I think 'heights' only refers to when you can see the ground. And yes I know you can see the ground from 4000 feet in the air, but it's really not the same thing.

I think this will be something I will admire from afar.

Note to MIL

2006-12-12T10:02:00.000-05:00

Note to MIL- I hope when you read the title to the previous post, you didn't think I was refering to Austin being asked to leave school yesterday. I support your decision and he seemed properly chastised regarding it. He awoke from his nap stating he wanted to go to school on Wednesday and that he would behave and follow directions.

Note to others- Austin's mema is his nursery school teacher. When he wouldn't cooperate and engage in the required activities yesterday he was removed from the situation. Unfortunately I think the real problem is he is still not potty trained. The other boys have noticed and commented on it. I think this upsets Austin. At first I was upset that the boys were commenting, but I have decided that perhaps a little peer pressure will help this situation. Austin is not incapable of going potty in a toilet. He can do it, WHEN he wants and on his terms. Unfortunately, he is choosing not too. Although I have seen an increase in his desire to use the potty since the 'peer pressure' began.

I am open to advice from others on this situation.

4 year old Suspended

2006-12-12T09:08:00.000-05:00

This is going to far. What is our society coming to when a 4 year old boy is suspended from school for hugging a teacher's aide? The original letter to the parents from the school district stated he was involved in ' "inappropriate physical behavior interpreted as sexual contact and/or sexual harassment" after he hugged the woman and he "rubbed his face in the chest of (the) female employee" on Nov. 10 ' After the boys father complained the school district removed references to sexual contact and sexual harrassment.

What 4 year old even know what sexual harrassment is? And how is a hug from a 4 year old ever inappropriate? If the teacher has concerns with a child touching her, perhaps she SHOULDN'T BE A TEACHER! I understand that at a young age you need to talk to your child about inappropriate behavior, such as, hitting and physically harming others, but hugging?!?

As I mentioned this to a co-worker he related a story about a male friend who drives a bus. One day he helped a little kindergartener up the steps and the mother threw a fit. Again, he was being gentlemanly and he gets chastised.

I understand this country is a melting pot and we need to respect others, but there comes a point when PC goes a little too far. I could go on and on...case in point, the removal of Christmas trees from Sea-Tac airport.

I have come to the conclusion that perhaps I should stop reading the newspaper and internet news. I find myself yelling at inanimate objects. It can't be healthy!

Debt

2006-12-12T07:55:00.000-05:00

I read this article yesterday on debt to income ratio. While it may seem straight forward on how to calculate it, I found the ratings interesting. I thought I would share.

Add all your monthly debt obligations (using minimum monthly payments for credit cards) and divide it by your monthly gross income.

If you are under 36%, you are in great shape. If you are between 37-42% you are in an acceptable range. If you are in a 43-49% range you have too much debt and if you are over 50%, you are in trouble.

I haven't gotten up to courage to calculate our situation yet :)

Complete

2006-12-11T19:31:00.000-05:00

Blogger Beta transition complete...so much easier to modify the template...wish I had done this sooner!!

Autism Legislation Passed

2006-12-08T14:38:00.000-05:00

I was hoping to blog over the weekend, but time just got away from me.

On Friday I read an article in Newsweek. It is regarding the Combating Autism Act which cleared the House last Wednesday. The bill authorizes nearly $1 billion in research, a national public awareness campaign and early screening programs for each state to diagnose and treat children with Autism Spectrum Disorders.

This is phenomenal! When we first started noticing Connor's delays I went to the Ped. I get the feeling that she thought I was slightly exagerating. But she trusted my opinion that an Early Intervention evaluation was needed. When we felt an appointment with a Developmental Ped was necessary, she again trusted my opinion. It was determined that he had PDD-NOS. Pervasive Developmental Disorder is a behavioral disorder of speech, communication, social interaction, and repetitive type compulsive behavior. There are five types....Asperger's, Autism, Rett's, Childhood Disintegrative Disorder and PDD-NOS.

Had I not been pro-active, I wonder how long it would have taken to get Connor diagnosed and treated? Would we have just assumed he was a little slower than his brothers? Would he have made it to a mainstream school and been pushed aside because he was slower? That's the real concern. How many kids in the public school are seen as slow, or dumb, or 'retarded', when in actuality they may have a Pervasive Developmental Disorder. This bill will help identify those kids at a younger age. If treated, these kids have a lot of hope for improvement and will be more able to mainstream into a typical classroom.

As the parent of a child with a pervasive developmental disorder, I stood and cheered this news. I do a lot of silent grumbling about our government, but for once I am excited about a useful piece of legislation. I just hope it's not too late for some kids.

Busy

2006-12-07T08:19:00.000-05:00

Why is it that the last month of the year, when most of my fellow engineers are on vacation for the last 4 weeks, we are the busiest. Everyone saves their vacation time, but they are also trying to use up the last of their budgets. So us poor saps who are stuck at work get bombarded with requests. I hate it!

On a more positive note, I managed to win 10th row tickets to the Trans Siberian Orchestra performance. I was just telling my neighbor last week that I would love to go. She already has tix since her step-dad is a tour manager for the West Coast TSO tour. Now we can all go together!

Kids are sick again...another round of Amoxy. Of course they love the stuff so they don't mind. I just would like healthy kids for Christmas.

Our friend Sarah is back in the hospital after a visit to the ER and a harrowing ride up the Pike. Stop over to her site and send some positive thoughts their way.

2006-12-04T09:05:00.000-05:00

I have added multiple posts today, so be sure to scroll down.

2 last pics from this weekend.

Breakfast with Santa at the firehouse and Connor after dinner

Out-Teched- take 2

2006-12-04T08:42:00.000-05:00

I just posted the story about Ben and the remote. I decided I 'd quickly download all the photos I took this weekend and had a surprise waiting for me.

Saturday afternoon while the kids were napping, I was helping Jeff with some of his homework. He'd been taking photos of some of his machined parts and the camera had been left out. Shortly thereafter I feel asleep on the couch. I think the camera had been on the table next to me. Well the kids woke up and obviously found the camera. 17 pictures later, I remember waking up and finding the camera next to me on the couch. I assumed I must have somehow turned it on in my sleep. I guess not.

There were lots of finger pictures, but these are a few of the best.

A self portrait...I can't even tell if it's Ben or Connor! :)
And a pic of Austin and last, but not least, the ceiling

Out-Teched By a 2 Year Old

2006-12-04T08:28:00.000-05:00

We have multiple components hooked up to our TV...a VCR, a dual receiver DVR, a DVD, a stereo receiver and a CD player. It got to the point it required three remotes to watch something. We finally bought a (very expensive) universal remote. It made our lives MUCH easier.

Well on Saturday, while Jeff was at work, the boys were watching a show on the DVR. I slipped into the other room to eat a donut (w/o the help of kids) and overheard Ben asking to watch the Rudolph DVD. The next thing I know Austin is screaming. Ben got the remote and switched from the DVR to the DVD to watch Rudolph. Austin was not happy. BUT...the point is, it required Ben to first hit the activities button, then the watch a DVD button and then start up the DVD when the menu appeared. Most adults that visit our house need WRITTEN instructions on how to use the remote, but not Ben!

I think we are headed for trouble with that one...he's a little too smart for his own good!

Parent Teacher Conference

2006-12-02T19:03:00.000-05:00

Probably the quickest conference ever because they were running over 30 minutes behind schedule...but in sum...they all LOVE Connor (I have to admit he is the sweetest little boy). They think he is making wonderful progress, and expect even more from him when he starts attending full time in January.

It was such a hard decision to put him in an integrated classroom. After all we had been through with Austin, no one had ever suggested he go to an integrated class. Maybe it was because he started therapy at a younger age, or perhaps it was that by the time Austin was 'of age' for a classroom setting he was doing MUCH better. So when it was brought up with Connor, we weren't sure what to expect.

I am so glad we went forward with it. He is the baby of the room. He started at 32 months and most kids were already three and four, but the teachers feel that he's working at an appropriate level. It look forward to even greater progress at our next meeting.

Good News

2006-11-29T22:16:00.000-05:00

My friend's daughter Sarah headed home from her 2+ month stay in the hospital. See her her link to the left.

The other bit of good news is our Christmas present has arrived...our laptop. I can now blog much more easily from home!

Adults Only

2006-11-29T10:14:00.000-05:00

The adults had the chance to get out this weekend...although I think my Jeff and Rachel had the most fun!

Morgan & Rick; Rachel's own personal pitcher

Rachel, Chris and Jeff & Nadene
My Jeff

Pics

2006-11-29T08:35:00.000-05:00

Some pictures from the past week.

A woodpecker eating my willow; and the boys playing choo-choos

Ben & Austin handcuffed themselves, great use of Austin's police kit from Aunt Cindy & Uncle Andy
My littel Injun playing the organ

No more pie! Connor after his third piece on Thanksgiving! And celebrating Big Papa's 82nd b-day!

I See Dead People

2006-11-29T08:12:00.000-05:00

Well, not me personally...but we think Connor might.

A few weeks ago Connor came home from Aunt Karen's house asking where Anna was. We asked if he meant Nana and he said 'No, Anna'. So I went to he school notebook to check his class list...and no Anna. We don't know an Anna, so we let it drop.

Last week he was at Aunt Karen's and was asking about Anna. My cousin Morgan asked him some questions about Anna, what color hair, glasses, how tall, etc. He pointed to a picture way up on a shelf and said 'Anna'. Now this picture had 4 people in it...none that Connor knows. So Morgan takes the picture down and asks Connor to point to Anna. He points to Karen's mother who passed away about 3 years ago...before he was born!

We are a little freaked out, but if 'angels' are watching over him...I am not one to complain.

Genetics

2006-11-28T08:18:00.000-05:00

It only took weeks of calling, but I finally heard from the genetics counselor last Wednesday...of course I was Christmas shopping in a crowded mall and had some hearing issues, but it was a good conversation. I think we are finally making headway.

Connor's testing for VLCFAD (very long chain fatty acid) was negative. We were pretty sure of this, but just wanted to cross it off the list.

We also discussed testing of Connor for Tuberous Sclerosis. The geneticist and I have been butting heads on this issue for 6+ months. I even have the neuro and developmental peds on my side. We know both Jeff and Austin have a mutation on the TSC2 gene....I am clear. Science has so far not proven that it's a disease causing mutation. Jeff is symptom free and has no outward clinical signs. However, I feel he should have a brain MRI and an ultrasound of his kidney, liver and heart just to make sure. It is VERY common for TS to go undiagnosed because symptoms can be so mild. Austin has no outward signs but has the IS and the brain lesion. Granted it's only one lesion. His ultrasounds were all normal at 24 months of age. But I feel like we should continue to do ultrasounds to be sure. Besides, the only drug that keeps his seizures at bay is a TS drug. A drug that a lot of doctors won't use unless they have already proven a person has TS and seizures.

Then we go further into Jeff's family tree and there are more family members with EEG abnormalities, possible seizures, possible narcolepsy and a great uncle with a brain mass. This brain mass is what interests me most. It appears on a CT scan as a mass of dead cells the brain has grown around. Since the beginning with Austin, before we even knew about great uncle's mass, they have said that Austin's brain will eventually 'grow around' the lesion. This sounds just too similar to ignore.

Now we move on to Connor who has PDD and no outward clinical signs. Mental impairments are a common factor for TS patients. I think the next logical step is to have Connor tested for TS. The geneticist disagrees. I feel even though science hasn't proven this is a disease causing mutation, that there will always be that first patient and that first case that proves a scientific theory...and while I know my family is one in a million, I didn't want to prove it this way. But I also don't think it should be ignored.

So moving onto my point. In the call with the genetics counselor, she said that the dev ped and the geneticist are meeting in early 2007 to discuss a few patients and in particular to discuss this TS testing with my kids. I am anxious for this meeting to occur. We have already scheduled our next appt for late January and hope Connor will be having the TS test done shortly thereafter. Until then, we'll keep waiting and wondering.

A Glimpse of Austin

2006-11-27T13:33:00.000-05:00

Jeff and I laughed hysterically when we saw this in Sunday's paper. It's not so much what he does, but his comment immediately afterwards.

Every time Ben or Connor comes running to us crying, we ask what happened and before we can get a response from them, Austin chimes in with either 'it was an accident' or 'it was a mistake'. This is followed by a stretch in time out for Austin. Because, throwing a truck at his brother's face, jumping on their backs, taking their toys and pushing them aren't what we consider accidents or a mistakes!

IT Help

2006-11-27T10:10:00.000-05:00

Do I have any IT people reading this?? If so I have a question for you.

If you put a new version of a web application up for your compnay and it REPEATEDLY crashed over a two week period...does it not make sense to put the old version back into place until the bugs could be worked out??

Well my Big Company can't seem to figure out what to do...so they just let us linger and continually send us apology emails. Did I tell you this is a business critical application? What good is an apology?!?! Just fix it!!

Blah

2006-11-20T10:52:00.000-05:00

I am kind of in this Blah place right now...

I have no motivation to Christmas shop, I have no motivation at work (hence this post!) and I really don't have the motivation to do anything around the house. Perhaps it's the weather...it's finally heading towards winter and it's been raining for almost a week.

We aren't really doing much around here. We did attempt to take the three boys shopping on Saturday, but about 30 mins into it, we were questioning our sanity. We did nothing all day Sunday except watch Jimmie Johnson take the Nextel Cup... and patch a head laceration... which is becoming common practice around here. Although I have set a band aid mandate... no blood... no bandage.

Maybe I just need some time off... or maybe I need Jeff to be done with school. It's ruled our lives for 3.5 years now. I am so thankful he'll be done in 6 months.... not as thankful as him I am sure, he actually has to do the work...but it'll be a relief to have it done.

Jeff and I are taking Wednesday off to try and finish our shopping. I try so hard to be done before Turkey Day. I just can't bare the malls after then. I'll probably be offline until next Monday...so until then...

Thanksgiving Blessings to all!

And a Happy belated Birthday to my brother Pat and my Aunt Karen.

Also to R & K- if I don't talk to you, good luck with the appt, let me know how it goes!

I Bit the Bullet

2006-11-16T11:49:00.000-05:00

So I was sitting here gathering my thoughts for the appeal to the insurance compant regarding the denial of the EEG in Boston. I decided I wanted to call the local hospital to get a little more information on their video EEG process...hoping to find situations I found lacking to use as ammuntion in my appeal.

I got in touch with someone in the CNP lab (clinical neurophysiology). She answered a few questions and then referred me to Darryl, a nurse in the EMU (Epilepsy monitoring unit). After talking to Darryl and expressing my concerns and asking a TON of questions, I have decided to have the EEG done here in Albany. Yes the accomodations may not be quite as nice, BUT, I will only have to take one day off work and family can come visit and entertain him.

I hope I am not making a mistake...for two reasons. One, I don't want my insurance to deny our visits to the neuro in Boston since we are bending to their request to stay in-network this time and two, I hope this will be a pleasant experience. If it's not, then I have that much more ammuntion for the next time around!

It will probably be at least two months from now, unless they get a last minute cancellation.

A Valuable Lesson Learned

2006-11-15T16:34:00.000-05:00

If you are taking a shower and your cell phone rings...either

a) don't answer it, no matter how important the call may be nor the fact that you have been waiting 5 hours for the call

or

b) if you do answer it, don't lean out and steady yourself on the towel bar, because the towel bar WILL break and send you careening headfirst onto the tile floor, thereby soaking EVERYTHING and bruising large portions of your body.

Can you tell which option I took?? And I missed the call!

Yes, feel free to laugh with me....

Conflicted

2006-11-14T11:47:00.000-05:00

So it's been almost 3 week since we were supposed to go to Boston for Austin's EEG. I still haven't figured out what we are going to do. I am conflicted.

The insurance company wants us to stay home and have it done at the local hospital...but I am not sure I have faith in them. I called and talked to someone in the EEG lab. He said they only do ambulatories for 24 hour EEGs. I am not sure if that is the best solution. Austin has had 2 ambulatory EEGs from there. Both were supposedly normal. I say supposedly because those were the ONLY two tests that have ever read as normal. I asked the tech about the process for reading these ambulatory EEG's and if they pick up everything. He said a computer reads it and that it should pick up everything. On the other hand...it's so much more convenient.

Part of me feels like giving in to the insurance company and having an ambu test done...but what if it comes back normal again...when he hasn't had a 'supposedly' normal EEG in over 18 months and it was one of their ambu tests that said it was normal. I will not be happy if it turns out to be a waste of time.

I have a call into the neuro at Children's to get his opinion. As much as it's a hassle to travel 3 hours for an EEG, especially during the holidays, I want him to say that he'll be willing to fight the insurance company to get this covered. At the same time I need to talk to the neuro about the ERG, electro-retinography. This is for his peripheral vision. He is due this month but they generally schedule 3 months out. I am not pushing to have this done. Jeff and I both feel the possible peripheral vision issues are really a non-issue. It's more important that he is seizure free. Besides, I am not eager to put him under general anesthesia again after the last time. That said, I know the neuro is going to tell me it should be done.

So many decisions to make...and I just don't have the mental strength to make them. Any one have any opinions eaither way?? I appreciate the input.

On a more positive note...Connor is doing so well in his special needs school. The teachers love him and I always get great notes from them in his therapy book. I can't wait until his parent teacher conference though so we can talk more in-depth.

Ben is also doing great in Nursery school. He is at least 6 months younger than all the other kids, but he appears to be holding his own. I am so proud of him!

Pics

2006-11-14T10:20:00.000-05:00

L: Nana & her boys...Aaron, Ben, Connor & Austin
R: Katelyn

Will Wonders Never Cease?

2006-11-13T07:54:00.000-05:00

We don't have a home phone...just cell phones. We also have a BIG family...lots of people to talk to. Because of this, I am almost constantly on the phone, no matter where I am. It drives Jeff crazy. So Sunday... at about 5 pm, we were on our way home from a birthday party and I realized something. My phone hadn't rang all day, nor had I made a call. Unbelievable! The first call finally came at about 8:30pm, except I was already asleep...sorry to have missed you Mom!

Date

2006-11-10T09:58:00.000-05:00

We had a date last night! It's been a while since we have done that. The original intention was shopping for a new rug and getting some Christmas presents. However, I casually mentioned that perhaps we could eat at the new Cheesecake Factory. I said this knowing I already had cheesecake at home in my refrigerator, but Jeff did say he'd take me for my birthday. We never quite got around to it though. It was nice to be an adult and order a beer and sit and relax and not be mindful of what my boys were doing...so to Gram & Aunt Karen...thank you for keeping the kids, we had a FABULOUS night!

I may be 5lbs heavier today...but it was WELL worth it.

Too Much, Too Little or Too Boring?

2006-11-08T10:56:00.000-05:00

I know I haven't been posting. I am trying to decide if it's because I am so busy, or because there isn't enough going on to blog about or if it's all just so boring that I don't want to subject you to it.

Well subjected you are...

We had a pretty slow weekend for once. If you know me personally, I have a hard time sitting still. I need to constantly be doing something productive, even if it entails housework. On Saturday Jeff worked then we raked the backyard then we went shopping. The boys (aka the men) all played poker Saturday at our house until the wee hours of the morning (congrats on winning the pig Chris). So Sunday we got a late start to the day... and then did NOTHING all day until it was time for dinner with the in-laws. I mean I did a little laundry, but nothing. I kept thinking we should go out and look for a new area rug (which we started to do Friday), or work on some of the projects around the house that aren't done, but we didn't. I think I am happy about doing nothing....but it also means I have nothing to show for a whole day. I have issues with that.

On Saturday I got a letter from our insurance company stating that our medical plan was cancelled as of 10/1/06 due to non-payment. I had an inkling this was coming. It's happeneded before. So Monday morning I call the lab I work for and ask what's happening. I am told it will be reactivated by the end of the business day. Then we get an email from the owner stating that the new accounting system wasn't allowing them to cut checks so they had to 'de-bug' it before they could pay. BUT that it will be fixed and be retroactive. How convenient that the system couldn't cut checks, but it still found a way to subtract our medical premiums from our paychecks! Well, it's fixed, but I now have to wonder if the referral to Boston got denied because of this. Maybe they knew they had yet to receive payment and were reluctant to agree to $10K of medical bills?

Yesterday I had a day off...it was a long time in coming. Not that I feel it's important to have Election Day off, but the owner is an immigrant who strongly feels that each and every American needs to do their "Civic Duty". Does he not realize it takes 10 minutes to vote...and that's IF you have to stand in line???

But it was still a day off...one whole day of no kids...no work...well, there was work. I just said I can't sit still. I was still up at 4:45 to get the kids up and out of the house. And then I had an early morning trip to Target to buy Cars. That was followed by about 3 hours of raking leaves in my front yard. Of course my trees are still half full so I am in no way done with raking. The one perk was lunch with my baby sister...so that I could grill her on her college search. She's intent on staying near or at the same college as a sibling (there are six of us...and as of next year, four will eb in college)...but I am trying to get her to drop that idea. All three schools are within 1.5 to 3 hours away....she can really come home anytime to see siblings. She is just very unsure, but I don't want to to make a concession on her college choice to fit with a sibling.

Then it was off to the Peds office for three flu shots. Not a good way to end the day...for us or the nurses!

Two pics for you... Ben insisting on eating his bagel WHOLE and getting cream cheese everywhere and Karat praying he drops some of it down to him.

A Higher Being?

2006-11-03T13:40:00.000-05:00

I am a firm believer in fate and things happening for a reason. Even if I'm not happy how something turns out, I ususally find out later that there was some type of positive that occurred because of it. It's happened this way many many times in my life.

Today's case in point... I was reading Sarah's blog for a post-op update. I had talked to Jodi last week and she mentioned how Sarah was exposed to Pertussis. Come to find out, she tested positive even though she is symptom free. Not only that but Children's ICU, ER and 9N (the epilepsy floor) have all had outbreaks. Even the Boston Globe reported on it.

Well, as mad as I was that our insurance denied our visit last week, perhaps it was that Higher Being making sure that Austin would not get exposed. Kids with epilepsy shouldn't get the Pertussis vax and consequently, Austin never finished his series of shots. Plus when kids with epilepsy get sick, their seizure threshold is lowered, allowing for possible breakthrough seizures. I know kids that have had breakthroughs and never re-acheived seizure control after the fact.

So, do I 'thank' my insurance company or thank the Higher Being that steered us away from Children's last week? I think I'll thank the Higher Being.

Oh What a Night!

2006-11-01T07:47:00.000-05:00

My little trick or treaters had quite a day and night. We started st the AFLAC Halloween party that Grandma Sandey's employer so graciously puts on for the kids then it was home for a quick bite of pizza then out into the neighborhood. The weather was great...if a little too warm. It got to just about 70 in the northeast yesterday and Mom was sweating by the time we were done, but the kids made out great...lots of chocolate for Mom in the coming days!

Ben, Austin & Connor Austin & Ben

Austin & Connor
Ally & Cousins Summer & Autumn
Carli, Enzo, Austin, Ally, Connor & Ben

I will put all the photos up on Ofoto if anyone wants to order prints.

Also, if you have a moment...say a prayer for Sarah as she undergoes her hemispherectomy today.

And one last note...Happy 1 year Seizure Free to Austin. I knew we would make it there again! Hoping this is the first of many.

Autumn

2006-10-31T09:33:00.000-05:00

Well it took about 3.5 hours, but the backyard is 95% free of branches. Of course as I was raking the side yard I realized none of the leaves belonged to my trees. I think they came from across the street. Is it wrong to blow them back over??

Stayed tuned tomorrow for Halloween pictures.

I'll Take 'Sick, Sick and more Sick' for $1000 Alex

2006-10-30T13:15:00.000-05:00

Can I title my post Sick, Sick and more Sick again? Because I am sick of my kids being sick, I am sick of the weather and I am sick of my insurance company.

So on Saturday morning I realized my kids still weren't getting better, despite the antibiotic treatments. Ben had been on them for a full week and Connor had been on them for four days. Austin has been sick, but hadn't been into the Peds office yet. So I got an appt for all three kids. The dr listened and checked over B & C and then said he feels Amoxycillin itself is not enough to combat sinus issues. So, he put them both on Augmentin. Then he listened to Austin and checked him out. He said Austin sounded the best, but he has pink eye! Yeah, that's exactly what we needed on top of everything else. So we waited with the three kids in one small exam room for the scripts. I never realized how much damage kids can do in one small room in a short period of time. Thankfully Jeff came with me. I was considering taking them all myself. As it was by the time the dr came back with the scripts, his room was a mess and Connor had a beauty of a hematoma on his forehead from Ben's front teeth. I think the office was happy to see us leave. I am pretty sure the phone operators know me by voice when I call! I am surprised they don't have caller ID and just answer the phone..."Hi Jen, who is sick/hurt/needs a referral today?" But, by Sunday night they all seemed to be doing better. At least they were acting like they were better. So I guess it was worth it.

Secondly, I am sick of the weather. I spent the time I was supposed to be in Boston raking and cleaning up my yard. I'm not entirely sure why I did it, though. See, we have 2 willow trees and willows don't drop their leaves until late...meaning usually after the first snowfall in this part of the US. So I knew full well that I would have more yard work to do, but I wasn't expecting to have to do it so soon. Mother Nature decided to unleash winds on us yesterday...and I use the term wind lightly. There was nothing remotely windy about it, it was gusts in excess of 40 mph all day long, some even greater. My backyard looks like a tornado hit. I pity anyone who actually lives in tornado alley. I was going to post a picture...maybe I still will, but it just doesn't do it justice. I look at the ground and I wonder how anything is still in the tree. We have branches everywhere and if you aren't familiar with willows then you have to realize these aren't the type of branches that you can bundle, nor can you break them down and put them in bags easily, because they bend, they don't break and as soon as you release your grip on them, they spring back to their original shape. I suppose I shouldn't complain...it could be worse. The willow that straddles ours and the neighbors yard lost an entire segment of the tree. And these trees are 50+ feet tall. It's amazing that it fell on a path missing their house and their shed. You can guess what I'll be doing after work today. At least it is a pleasant mid-fifties and sunny...good raking weather.
Yeah, this just doesn't do it justice.

And last but not least I am sick of the insurance company. I got the denial letter over the weekend, now I have to sit down and write my appeal. I have a call into the neuro at Children's. I hope he came help me out somehow.

Well back to work...if you have a minute and are so inclined...please send good thoughts and wishes to our friend Sarah....a beautiful 3.5 year old who is having a hemispherectomy on Wednesday.

Here I Sit

2006-10-27T08:24:00.000-04:00

Here is unfortunately my office desk at work, instead of Boston Children's. Yup, you guessed it, insurance denied the request for Austin's EEG. Well they didn't deny the request per se, the just decided not to cover it as an in-network procedure, meaning if I want to pay big bucks, I can have it done in Boston. They would prefer I had it done here in Albany. Granted, Albany is working on their neuro and EEG depts, but they aren't up to snuff yet. And they did misdiagnose Austin for the first 5 months of his treatment!

Right now my plan is to file and appeal, the problem is the scheduler at Boston said they are packed with appointments over the next few months. It could be January until they have an opening again. All the fight has gone out of me for today. Trying hard not to think about it.

On a more positive note, the police have caught the burglars. We do still plan to put an alarm in, but I can rest a little easier now.

Insurance Companies Are Supposed to Help, Right?!?

2006-10-25T12:04:00.000-04:00

I know you need insurance, but why oh why do they have to be so difficult to deal with. Austin's EEG's are routine...we do them every six months. This is not new to the company. They have always approved them at an in network level, but this time they are being difficult. I have gotten calls from both the PCP's office and the billing office at Children's. They asked if I could call and figure out what the problem is.

So I call
Me: I am following up on a request for a 24 hr EEG. It is out of network but we are waiting for approval at the in network benefit level.
Utilization Mgmt rep: yes, we originally denied it and asked for more information. We just got it yesterday. A determination has not been made.
(now I KNOW the info was faxed on Friday!)
Me: So, this is scheduled for tomorrow, can I expect a determination today.
UM rep: mostly likely not today.
Me: How about tomorrow?
UM rep: possibly, but I can't promise it
Me: so what will it cost me if it's not approved
UM rep: let me transer you to a benefit specialist
Me: (Grrrr!) Fine

Benefits rep: How can I help?
Now does she want my real answer or my polite answer?? I go with polite...
Me: My son is having a procedure done out of network. So far a determination has not been made if it should be covered at an in network level. I am trying to figure out what it will cost me.
Benefits rep: well, you have 70/30 coverage, with a $1000 deductible and a $5000 out of pocket max.
Me: Can we talk actual dollars? The procedure is about $4000.
Benefits rep: It doesn't matter what it costs. We make a determination on what we think it costs regardless of what the hospital bills. So we may think it only costs $2000, and then the hospital can bill you the remaining $2000. But then we have to adjust for the 70/30 and deductible....

At this point I am about to lose my lunch, no wait, haven't had lunch yet...well, I am going to lose something.
Me: So you can't tell me how much?
Benefits rep: well if you had the procedural code and how much they are charging, I might be able to figure it out.
Me: fine I will call back

I truly think part of getting hired by these insurance companies is a training course of how to completely annoy the beneficiaries. Because I feel like anytime I call, I end up mad and with no answers.

So I tried calling Children's for a procedural code and cost and shockingly no one has called me back. So right now I don't even know if we are still going.

Stay tuned, it's got to get better...right?

Keep Heaping, I'm as Strong as Atlas

2006-10-24T11:42:00.000-04:00

As if one kid on antibiotics wasn't enough, now I have two kids on them...Ben for his ear and Connor for his sinuses. The NP feels that three weeks is long enough for one little boy to suffer.

Let's add to that that insurance still hasn't finished determining if they are going to approve Austin's EEG that is scheduled to begin Thursday, which should be a no-brainer[he he get it brainer!] since they've approved the last 15 or so of them and oh, yeah, did I forget to mention the NIA (national imaging alliance) has decided to reject the referral request for his brain MRI...am I forgetting anything...is there enough heaped on my shoulders right now?!?

No, then let's add in the recent neighborhood burglaries...and the strange car that Nay saw on the side of the road by our houses this morning...that should do it. Although the police claim they are close to arresting someone, he added in that locked doors and windows have yet to deter the thiefs! They are still breaking in in broad daylight, using front doors and windows. He also said they are avoiding houses with dogs that barked, but Karat isn't exactly a deterrant...for one, he doesn't bark and for two, he'd probably help them, as long as they pet him. He's cute, but the cheerios are drifting further apart everyday!

I think that's it, I'm still standing...good for today

Sick, Sick and more Sick

2006-10-23T08:25:00.000-04:00

I hate cold season. We are generally a healthy house, but this cold season is starting out rough.

It started over two weeks ago with Connor, then Jeff got sick, then Austin got a little sick. We thought we were doing good, then Ben got sick and has a bad ear infection. Then Connor got sick again! Austin woke up all stuffy again yesterday and Jeff and I started feeling sick last night. This REALLY needs to go away! Especially with Austin and I headed to Boston on Thursday.

So I guess there have been a rash of robberies in our vicinity lately...and I don't mean 1 or 2 it's more like 20! Not that we knew this based on an article in the paper or a police report, it's just trickled through the neighborhood by word of mouth. This concerns me. How can we be good neighbors and watch for anything out of the ordinary, if the police aren't even telling us there is a problem?!?

I went to a conference for the Epilepsy Foundation on Saturday. Not only did we have the Chairman of the National Foundation there, but the new Chief of Neurology for Albany Med was there...and he's an EPILEPTOLOGIST!!! Finally, I think there is a leader in place there that has plans to FIX the critical ped neurology concerns in the area. I don't expect changes overnight, but he has a vision and it appears to be good! Also, it was announced that the National Epilepsy Foundation is coordinating a March on the Capitol to be held March 31, 2007 in the National Mall in DC. Finally a chance for those suffering from Epilepsy to be seen and heard...but is the government listening?? Let's hope so.

Contract workers

2006-10-19T08:51:00.000-04:00

Quote of the day....as stated by a fellow contract worker...to the boss of the company that we are contracted to:

"[Being a contract worker means] we have all of the reponsibility and none of the rights"

Yup, that about sums it up...

Yippee!

2006-10-16T16:42:00.000-04:00

Sarah is out of the coma and doing ok right now!! That Monarch was telling me something!