New Platform

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

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

18 and legal...watch out world!

Sharon & Barbara- age 6, 1st grade

Moving

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

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

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

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

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

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

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

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...

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

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

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

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

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

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

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

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

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

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.