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??

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.

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!

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.

SUCCESS!!

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.

Conflicted

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

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

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???

Evaluations are DONE!

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.

Day of Doctors

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

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.

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!

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.

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.

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.

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.

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.