Wednesday, November 29, 2006

Good News

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

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


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

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.

Tuesday, November 28, 2006


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.

Monday, November 27, 2006

A Glimpse of Austin

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

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 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!!

Monday, November 20, 2006


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'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 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!

Thursday, November 16, 2006

I Bit the Bullet

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.

Wednesday, November 15, 2006

A Valuable Lesson Learned

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


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....

Tuesday, November 14, 2006


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'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!


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

Monday, November 13, 2006

Will Wonders Never Cease?

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!

Friday, November 10, 2006


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 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.

Wednesday, November 08, 2006

Too Much, Too Little or Too Boring?

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 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 whole day of 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 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.

Friday, November 03, 2006

A Higher Being?

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.

Wednesday, November 01, 2006

Oh What a Night!

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.