Wednesday, January 31, 2007

From the Mouths of Babes- Take 2

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

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!

Monday, January 29, 2007

From the Mouths of Babes

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

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.

Tuesday, January 23, 2007

Austin

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.

Friday, January 19, 2007

Colleges

** 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

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.

Thursday, January 18, 2007

EEG Results Are In

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.

Wednesday, January 17, 2007

Thank You Jeff

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

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.

Tuesday, January 16, 2007

EEG Done, Now We Wait

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

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
LogoThere 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...

Sunday, January 14, 2007

So Far So Good

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.

Friday, January 12, 2007

Strange Coincidence

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.

Thursday, January 11, 2007

Intuition

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

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

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

EEG planned

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.

Wednesday, January 10, 2007

More on Austin

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.

Tuesday, January 09, 2007

Panic

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.

Monday, January 08, 2007

New Daddy

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

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.

Friday, January 05, 2007

Wow...

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!

Thursday, January 04, 2007

Finally

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?!?

Wednesday, January 03, 2007

I'm ALIVE!

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!!