a new school year, a new man!!!!

Hey everyone! So it has been a while since I have updated. School started back up about a month ago and Collin is now a 2nd grader. It's no secret that Collin HATES school. Why wouldn't he...NO ONE likes to do anything that is hard and frustrating for him and for Collin school is HARD. As the summer came to a close and the new school year was about to start we defiantly noticed Collin getting stressed and noticed the "return of the tick". We weren't surprised at this happening as we were told that stress can trigger it. Collin grumbled in the weeks leading up to school that he didnt' want to go and blah, blah blah. We tried really hard to put a stop to it and finally told him ENOUGH. Together we decided that we were going to start this new school year with a NEW ATTITUDE. It's a new teacher whom we had heard AMAZING things about, a new class and new peers. We asked Collin to at least "try" and be positive. He agreed...although I defiantly didn't think he was gonna keep up his promise to try when he left for school that first morning.......


first day of school....yeah not so thrilled

But to my absolute delight when I picked him up from school that afternoon this is how I found him..


a big smile

He liked it! In fact I might even go out on a limb and say he REALLY liked it! A month later and Collin is still smiling and over all seems to look forward to getting up and going to school. He can't say enough about how awesome his teacher Mrs. Dietrich is. She is a sweet, smiley, pretty, energetic and above all kind hearted teacher. She makes Collin feel GOOD about himself and uses positive words to encourage him.  She's adapted lesson plans to suit Collin..for example he only is expected to test on 6 spelling words vs the 12 the class does. When he does try out the other words she never marks him wrong if he gets the "other" words wrong. Instead she over looks them and give him the "AWESOME" stickers for the words he got right! I can't even begin to tell you how this makes me feel. To see Collin come home from school happy, to see him making positive steps forward. I could just cry. Now, Mrs D isn't working alone...Collin still gets pulled out for reading and Math. But right now he is really liking math, they are learning about the "value" of number ie the number 54....the 5 is in the 10's column and worth 50! For some reason this has clicked with him and he seems to really understand..which makes him feel good. He can sit down do his Math home work basically with no help and isn't frustrated. We are still getting OT, PT, and ST but again all these things are falling into place.  I know it's only a month in, but I have such high hopes and feel so good about this year! I know it's still a long road ahead, but for now I have a new school year, a new attitude and a new, happy and feeling good about himself man!!!!



Neurology apt

Well, it was another big day for us and the road on Collin's NF Journey. We finally had our apt with the Neurology Dr. For those that don't know and are new to this blog it is VERY important that kids with NF be followed by Neurology to make sure there are no tumor developing on the brain, or other Neurological changes. I might suggest to those that are JUST reading the blog for the first time to go back and read the first few posts on here it will fill you in on what NF is and help you better understand what is going on with Collin.

  All and all the appointment went well and we didn't learn anything major that we didn't already know. Really I'm not gonna lie that the whole thing felt like a waste of time and money and gas..The Dr said "Collin has NF, NF can lead to some serious neurological issues including tumors on the brain." Yup thanks Doc, tell me something I don't already know. OK, I know he is just doing his job and being that this was a first appointment didn't really expect to much from this apt. I knew it was gonna be just the run of the mill office visit.

  The Dr examined Collin, oohed and ahhed over how many CAL's he has and asked family history, and Collin's developmental history ect, ect so on and so forth.

  Finally when we got to how Collin had developed the weird tick. Which has disappeared in the last 4 weeks. The Dr did say that this semi concerned him although given they were going away not majorly. After doing some muscle strength tests with Collin and seeing how he is STRONG, yet low tone all at once he talked to me about how Collin will need at some point an MRI...which is something that most NF kids need. After tossing the idea back and forth should it be now or should we wait and talking with Dr. Greismer who is HEAD of neurology we decided that since Collin's tick are slowing and his low tone is symmetrical that we will wait a year to get the base line MRI. The reason for it is given Collin age and inability to be perfectly still he would need to be sedated and lets face it since it's nothing urgent we would all rather wait. So, for now the game plan is to keep an eye on him, should the tick return I am to video it as often as I can AND give them a call ASAP and we will schedule an MRI. We were also suggested to get Collin on to a Orthopedic Dr in Boston. There is definitely some very slight bowing of his left leg and he pigeon toes both feet slightly.

All and all it was a bunch of being told things I already know and keep doing what you are doing. I guess it's better than going in and hearing a bunch or things we don't know and throwing another wrench in the mix right!!!!!

So that is that, nothing exciting but for now that is fine with me!

" I can see clearly now".....

Last week was Collin's bi-annual apt with Dr. Weisberg our eye doc. He is about the nicest person that you will ever meet. He is kind and patient and just down to earth. Collin has been going there for the past 3 1/2 years. Since when he was 4 he started to develop a "growth" on his upper right eyelid. The growth had to be surgically removed and turned out to be a cyst with cells consistant with NF. Even at Collin's first apt Dr. Weisberg had stated that Collin was ever so slightly near sighted, and although most kids at the tender age of 4 are slightly far sighted it was nothing to worry about. So this went on for a few years with never any major change to his sight. Always just ever so slightly near sighted. For those that don't know it is really important for people with NF to have their eyes checked and dilated once a year. Starting around 6ish people with NF can develop nodules in their eyes. This nodules can cause sight issues and even blindness.

  Anyway, In January when Collin saw Dr Weisberg to have the full eye exam he noted their had been some change in Collin's vision and although it wasn't major it was enough to make him put up a red flag, a very tiny red flag, but a flag non the less. He asked that he start seeing Collin every 6 months so we could really monitor his vision and for me to note any changes as well.  This past monday when we went back there was again a change in his vision. I actually wasn't shocked because towards the very end of the school year Collin was coming home complaining of headaches and this seemed to occur when the were doing alot of "board" work. There was a change in not only his "regular" vision but a slight decrease in his 3D vision as well. After all was said and done and Dr Weisberg assured me Collin's eyes were cleared of Nodules (for now) we decided to go ahead and check his persciption..although he never had glasses before they had checked what he "MIGHT" need in Jan. Again there was a change so we all decided that given the change in his visions, and the recent Visual Processing Dissorder diagnosis that the time had come to get Collin glasses.

  Let me just tell you he was NOT happy infact I will go right ahead and say it he was PISSED. He refused to even try glasses on at the office. So we took our scipt and went on our way. When Daddy got home from work we all went to Wal-Mart since their glasses are way cheaper and still do the job anyway. We picked out a pair that he would tolerate and the 9 day wait began. But today, they came in. We picked them up and being the mean Mommy I am made him put them right on. He grumbled about it for a bit, but then about 30 minuets later he said "Mommy wow, I can see those words down there" we were in a store and he was commented on a sign down the aisle. Gee what do you know!!!! So now we begin our life with Collin wearing glasses!!!! I have to say that I may be a little bias but I think he looks awefully cute in glasses.....

Got Gene-tics?

Today was another BIG day in Collin's NF journey. Today was the day met with the Genetics Doctor. Today was the day we got (or didn't get) and OFFICIAL NF diagnosis along with classifying what "TYPE". Now it's no secret that I myself have NF, and so does my sister and my dad and some of his siblings as well as my dad's mother. But NONE of us had EVER been seen by a genetics Dr. NONE of us had EVER gotten an official NF diagnosis. So in a sense today was not only important for Collin but also for all of those in my family with NF..as it is a "genetic" disorder and we would ALL have the same type.

       Anyway Collin's appointment today was with Dr. Laurie Demmer. She was super nice, and after talking to me about Collin's history. I know how much "history" can a 7 year old have? But you know she wanted to know things like how much was he when he was born, how old was he when he walked/talked ect. Was it a "normal" pregnancy and Labor and delivery. Then she asked about family history and I am pretty sure her hand was gonna cramp and that it would have been easier to tell her what does NOT run in our family. I told her as much as I could about who in my dad's family has NF.

   Next Dr Demmer looked at his body examined his CAL's and asked me about mine and looked at my "visible" ones. Including the freckling in the armpit since I had a "tank top" type of dress on. Next it was time to look at the spine. Spine looks great and NO curvature. People with NF tend to start developing scoliosis in the "pre pubescent" ages. We did talk about how Collin tends to turn his left leg in and how his knees turn in when he is running and riding a bike. Upon exam Dr. Demmer did say that she feels like it would be best for Colllin to see a pediatric orthopedist that knows about NF because she does feel that Collin has slight bowing to his left leg.

   I told her about his "tick" and she said what every other dr has said "20% of kids have them" but given the NF we definitely need to keep on top of him and see Neurology (we go July 28th). She did say to me that although she doesn't "THINK" this is what is going on with him, but give the NF that it could be a seizure..that kid with NF some times develop seizure disorders...great one more thing to think about. But I digress we will cross the "Tick" bridge when we get there...and by there I mean Neurology apt.

  In the end we sat down and she confirmed what I already knew. Collin  DOES have NF. he has Neurofibromatosis type 1 (NF1). This is nothing new to us. We knew it from day one, but like I said now it was an important apt because now it is OFFICIAL, it is documented and in his chart.  He has a diagnosis.

  Our next stop on the NF train will come in two weeks when Collin goes back for a vision screening. Should we take a poll to see who thinks he will end up needing glasses? Let's just say that I wouldn't be surprised if he does. If he doesn't that would be AWESOME, but given the recent visual processing disorder diagnosis I am gonna guess there is a good chance he will as MOST kids with a VPD require them....

Oh I did learn 1 thing today that I didn't know. That it is a defect on the 17th chromosome that causes NF. I have said this before having been a special needs teacher and working with kids who are missing a chromosome, or are special enough to have an extra one....isn't it AMAZING what ONE little chromosome can do. Just one little chance that one little chromosome is out of order, and it effects you in such a MAJOR way.

  So that is the latest with Collin. Please keep your comments coming. Share our blog with your friends, and don't forget to "follow" us.

A visit with the Pedi

Hi everyone. So last month I told you about Collin's IEP addendum meeting and how we (the IEP team, Dr.Davis and myself) thought that we should follow up with Collin's Pedi Dr. Osterov. Well there was a bit of delay in that because I had to wait for the Progress notes from the OT. Well they finally came in on Tuesday which was Collin's last day of 1st grade!!!!! I called our Pediatrician and got an appointment for this past Friday (June 22nd). The apt went well. Collin weighed in at 51 lbs and is 3feet 10 inches. That makes him 45% for height and 25th% for weight. Dr. Osterov did a quick Neuro eval and all and all he looks good. Gross motor strength was average, and there is some definate deficit in fine motor and a loss of strength there, but we knew that...that and the "tick" was our reason for the visit. I should clarify that we didn't make this apt to gain anything from it, just to make sure it was documented in his charts and that Dr. Osterov was in the loop.

   Anyway, we discussed the loss of strenght and the tick. Dr. Osterov shared with me that kids that have ADD/ADHD some times have ticks..actually it's one of the side effects of some stimulants that are given to kids for add/adhd. Although Collin is NOT on anything for it...as right now he is just considered borderline ADD that this is what could be causing the tick. Dr. Osterov said that the part of the brain that controls impulsive and things like ADD/ADHD and the part of the brain that most "ticks" are in are right next to each other and this is why they go hand in hand..the brain is making them BOTH fire off.

   She did say that she finally see what I mean by he is strong yet has low muscle tone...and was able to see both the "tick" and the turning of the left leg herself. She of course wants us to continue with the plan of extended school year and keep our neurology apt. Which is at the end of July. Dr. Osterov said that given that Collin's weakness is symmetrical and that he hasn't had issues with severe headaches that she has her doubts that any of these symptoms (the tick and loss of muscle tone) are from a fibroid (tumor) on the brain. She did say she wouldn't rule out the spine, but we will cross that bridge with Neuro.

So that was that!

  Tuesday we have an apt with Dr. Demmer who is the genetics Dr. This is our first meeting with a genetics specialist, so I am looking forwards to that. I assume it will require blood work and family history..but am looking forward to getting our kind of NF classified. It won't only help Collin, but will give some answers to me, and my dad, as we will all have the "same kind". So look for our post on our apt in the coming week.


Oh and I wanted to take a little brag moment. Like I mentioned Collin is officially a 2nd grader. This was a TOUGH year for him, but he worked so hard. Last semester on his report card he had mostly 2's and 1's. This one he got Mostly 3's and a few 4's. We are so proud of how hard he worked. You best bet those grades didn't come easy for him...and although he still has a long way to go the leaps and bounds he made this year make me so happy.

My handsome man on his last day as a 1st grader!!!!!

IEP meeting

Today was the day we met for the addendum to Collin's IEP. The meeting went well. Even with my two little guys with me....

  Anyway per the Dr Davis's report and suggestion we have added a social skill group to Collin's IEP. Since there are only 4 1/2 weeks left to the school year we will start this up in the fall. Although this was the MAIN reason for the meeting. Because they can't make ANY changes even little ones with out a meeting. However this meeting ended up being a blessing. Since the last meeting his annual IEP meeting in February some things have come up and we were able to talk about them today.

A big one is the "tick" I mentioned it to ALL of them and Collin's classroom teacher said she had been seeing it. Which I knew, but the OT person also said that she has been noticing it and was glad I brought it up because she was gonna ask me about it. Another semi alarming thing she said was that it seems like Collin is LOOSING strenght and muscle tone in his upper body..He has always been weaker on his left side and we knew that and have been dealing with it, but as of late he is more floppy and weaker in his upper body. Even doing simple fun tasks like the rocket launcher. (You know the ones we had as kids that you step hard on the "bladder" and it makes it blast off.) She has him do it with his arms and he can't do it. So that along with the tick is cause for concern. We also decided that his reading is falling way behind his peers so they are gonna do a 30 minuet pull out starting in the fall as well as having the Para help him in the classroom.

 Collin's IEP was written in February of this year, and they are good for a whole calender year. So it was good to make this amendments to them today and have them set for the fall instead of the school year starting and waiting 6 months to make the changes.

 So that is how the meeting went. Between talking to the support staff today and Dr. Davis' the other day about the tick, I am gonna try and see about giving Collin's Pedi a call and talk to her about the new things going on....again, I feel like it's always something

Tick, Tick BOOM!

Over the last few weeks, mostly in the evenings we have noticed what I can only describe as a "tick" with Collin. It happens when he is watching TV, or reading with one of us, or on the computer playing. But MOSTLY before bed when we are snuggling and watching cartoons.

    Collin "almost" looks like he has the hiccups. It's that up and down jerky/bouncy motion that you get in your upper body when your hiccups are bad...he does that. He will do that for a few seconds then pause and resume again in 15-30 seconds. After we had noticed it for a week we asked his teacher if she had noticed it in school. I was trying to pinpoint if he only does it while he was tired or if he does it during the day too. The teacher said she hadn't noticed but would keep an eye out for it. A few weeks later she confirmed that they have seen it a few times when he is at his desk. I have yet to ask his special needs teacher since I don't see her often, but I will get the chance tomorrow when we have the follow up IEP meeting. We wanted to meet again given the report from Dr. Davis had come in (like I talked about in the last entry).

   I did get a tad nervous and give Dr. Davis a call. I got her voice-mail but she was amazing enough to call back with in two hours. She did tell me that 20% of kids will have a tick at one point or another and they are usually brought on by alot of stress or major changes in a child's life. Neither of which are the case in Collin. She said as long as it isn't accompanied by a "vocal" tick not to stress over it to much. But defiantly to follow up with Collin's Pedi and to bring it up at the Neurology apt we have in late July. She said kids with NF will some times have ticks and "sometimes" the onset of those ticks are because a tumor in the brain. So, there you have it. I honestly feel like I could pop. How much more could happen....Ok fate I am NOT tempting you to show me what more could happen.

  So that is the "newest" thing with Collin...so lets add it all up

NF + an NLD + a VPD + EPD + possible ADD + a neurological tick = my precious, sweet, amazingly kind and loving little boy COLLIN!!!!

Can I have the envelope please?



for those that have wondered THIS is what a CAL (cafe au lait)

It felt kind of like a game show when I went to the mailbox and saw that thick envelope waiting for me. My first thought that ran through my head was "and the results are in" like we were announcing the winner of some grand prize. But alas, I knew just what that enveloped held. Just what it was gonna say. What I didn't know or expect was how I was gonna feel opening that envelope, and reading those words.
  
 That envelope of course contained the "OFFICIAL REPORT" from one Dr. Davis. Collin's developmental pediatrician. When Matt and I met with Dr. Davis two weeks ago to discuss her findings she presented it all with a kind smile, and sweet voice. The women oozes compassion. She presented everything in a way that even with out my back ground in special needs that I could understand. Making sure to explain what the names of each disorder/disability was, what that meant and where to go from here. It felt more like sitting down with a friend and talking. Although the news she was giving us was hard to hear there was comfort in her voice and the words she chose.

 Sitting down to read the report was a whole nother thing. It was clinical and sterile. With terminology like NLD-NOS and VPD. The words weren't unkind, and they weren't shocking, it was what we already knew..but they were technical and with out compassion and they sat in my stomach like a rock. There it was in black and white, all of my child's delays. All he has going on. It was like a slap in the face that this is reality. Collin DOES have a Nonverbal learning disability that is Not otherwise specified (this is the NLD-NOS). He DOES have a Visual processing disorder (VPD). Along with the other things I have shared with you in the last post.

Last night I got to go to a high school play and watch my cousin Heidi perform. She was AMAZING by the way. My Aunt Pauline was also there and before the show started we chatted. She mentioned that she had read the blog and had no idea all of this was going on. I shared with her how we had gotten the report and how it made me feel. She looked at me dead in the eye and said "Kerri, all you can do is take that and move forward, you can't look back. It's not gonna change it. Just take this move forward." These words really spoke to me. So I thank you for that Matante! That is just what I am gonna do. Take this concrete info and run with it.

The first place I am running to is the copy machine. Since Dr. Davis per the Hipa law is only allowed to share this report with other Dr's (that I give permission to) I will be making a copy for Collin's special needs co-ordinater at school. As well as for his class room teacher and for his sped teacher. I also plan to call a team meeting. I know there are less than 30 days left to the school year, and since they have 10 days to meet with me there will be less than 20 by that point..but I want and need to give them ALL the information I can. Make the proper changes to his IEP so that going forward, going into the 2nd grade these things will be in place from DAY 1.

Aside from meeting with the school, our other next step is to meet with the genetics Dr. this will happen on June 26th. Our hopes with this is to classify exactly what type of NF Collin has. To have a definitive answer there. Not that he will be able to change anything. NF isn't "Curable", but just to have more answers in the great Collin puzzle. We will also  have Collin's eyes re-checked as MOST kids with visual processing disorders require glasses. He will go to Dr. Weisberg on July 9th. This was actually already set up before any of this came about. In Dec when Collin went for his annual eye exam Dr. Weisberg felt that Collin was "boarder line" for needing glasses and wanted to re-evaluate in 6 months. So those are our next few things to happen. I suspect I will be back with an update in the next two weeks to share the outcome of Collin's team meeting.

Again, please follow our blog there is a button saying "FOLLOW" -------> and share, share away. you never know who MIGHT have NF...or a kid with issues similar to Collin's LD.

So what is going on? and what the heck is Neurofibromatosis anyway?

In the past few weeks many of my "facebook" friends have noticed my posts and status talking about Collin, some issues, and Neurofibromatosis. Lots of people have asked what is going on? What is neurofibromatosis? when did this all start? what does this all mean? So I thought I would start a blog to answer some of those questions as well as to help keep people up to date on Collin. As well as hopefully find and help other families that are going through the SAME thing.
 
  So where do we start? I guess I will start with What is going on? The easy answer to that is "alot." Basically Collin has a lot of learning disabilities and Matt and I are searching to find answers! I won't leave you hanging...I will get back to all of that!
 
    Basically all these things that are going on are attributed to Neurofibromatosis...What is Neurofibromatosis? Well Neurofibromatosis or NF for short is a genetic disorder that can cause a plethora of Learning disabilities, and "tumors" to grow on the skin, and the brain http://nfnetwork.org/what_is_nf/ <-------- here is some good info on what it is. If you click on the link you will see it talk about a few different kinds of NF..although he doesn't have an official classification we believe he has NF1. We will know for sure once we see a Genetics Dr.

I guess that brings us to When did this ALL start? In someways it started the day Collin was born, in other ways it just started a few weeks ago. If you followed the "link" I posted you will see that one of the things with NF are Cafe Au lait's or CAL's in NF speak. With in weeks of Collin being born he began noticing he had some CAL's...here is where I should tell you that I myself have NF, but it was NEVER an issue and I have never given NF a second thought until Collin! Of corse we asked our old Pedi whom we shall call Dr. Doo-doohead! (This will become evident as to why as you read on). So, Dr. D told us Oh it's nothing to worry about. He probably has NF like you, but it WILL NOT be an issue. Ok, makes sense to me. I never had any issues, never saw a special Dr so all is good in our world.
             Around the age of 6 months although he was sitting and commando crawling I started noticing that to me anyway Collin seemed to be a tad weaker on the left side and I felt like his left him turned in ever so slightly. So of corse I brought THIS up to Dr. Doo-doohead. and I point blank asked him "Could the NF be causing this? Should I be worried" to this he responded that Collin was perfectly fine and that given my background (if you are reading this and DON'T know me, I was a Early Intervention Teacher) I was just reading to much into it all. OK seems feasible. I mean I work with kids disabilities all day maybe I am just looking for something.

             Fast forward to age 14 months. I am extremely pregnant (due any day) and Collin is still NOT walking. He can pull up and cruise the furniture but he's not independently walking. I yet again address Dr. D and he gives me the same answer. He is fine..NF has NOTHING to do with this and he is just being a LAZY baby. Ok, ok..he is probably right. He finally started walking a few weeks later and I think to myself OK, guess I am just paranoid.

      Fast forward all the way to the start of Kindergarten, other than mentioning a few times to the Dr that Collin is "flaky or in his own world" I don't really address any concerns. Dr. D has told me he is fine. School starts and it quickly becomes evident that Collin is just not where he should be. I call the Dr and he says not to worry that Collin will catch up, and we will further discuss it at his well child check up. Thank Goodness Collin got an AMAZING Kindergarten. Mrs. Castriotta. She addressed me that Collin wasn't where she would like him to be and I agreed 100% she helped Collin get every service they could throw at him. I am talking Occupational Therapy (OT), Physical Therapy (PT), Speech Therapy (ST), and extra Math and reading help.
        
       Even with IEP (individual educational plan) in hand Dr. Doo-doohead still says "Collin is FINE, he will out grow it, and NO you don't need to see a specialist". So now I am starting to second guess myself...for the above and a other things I didn't like that how he handled with my other kids we decide to switch Dr.'s. Matt and I decide it best that we see a Pediatrician (Dr. D is a family practitioner). I ask some friends and come to learn about Dr. Osterov. With all the amazing things we hear, and in investigating into her practice we decided to take the plunge and make the switch. This ladies and gentlemen is the best thing I EVER did and where it ALL STARTS. One look at Collin's skin and the question "who are the specialists Collin sees" set it all in motion. Dr. Osterov is stunned and dare I say disgusted when we say "no one" and proceed to tell her what our FORMER DR has told us. Dr. Osterov tells us that NF is not a thing to mess around with and that kids with NF can develop tumors in their brains and on their optical nerves..it can cause BLINDNESS. She also said the NUMBER 1 factor that most kids with NF have is Learning Disabilities. Dear lord, what have I done to my kid by waiting SOOO Long. Dr Osterov gives us the names and numbers of people we need to see and so we begin our journey of finding out about NF and more importantly about Collin.

  By this point Collin is about to start 1st grade and the waiting list is UBER long to get into the first Dr we need to see. A pediatric developmental specialist in Boston at the Tufts floating hospital for Children. Can I just say what a LONG process this is. First before they will even put him on the waiting list there is a TON of paper work to do. It required myself filling out a 15 page report on Collin. As well as his teacher doing a 10 page one. Ohh here I would like to add a huge shout out to not only Mrs. Bohigian Collin's class teacher, my also Mrs Zib who at the time was Collin's special needs teacher. They both filled out a report so they could get a true pic of Collin.  Finally, on April 6, 2012 we get to meet with Dr. Davis. A very very sweet Dr. We start off in her office and she sets Collin up at a desk with some blocks while she talks with Matt and I about Collin's medical history, our concerns and basically why were were there. Let me just tell you we could have knocked this women over with a feather when she heard the "Old" dr's opinion and that seeing a specialist was NOT important. Anyway I digress. After talking with Matt and I for a good hour she sent us to the waiting room and did some "games" with Collin. She also called us back in and did a quick physical so she could see his CAL's and what I meant about his left hip/leg.

   Two weeks later with OUT Collin, Matt and I went back into Boston to meet with Dr. Davis about her findings. This visit brought so many answers, some relief and some anxiety.  So this kind of goes back to the "What's going on" question that everyone keeps asking me. So basically Dr Davis said YES the NF is defiantly attributing to Collin's "issues" and he is now the proud owner of several diagnosis. 
       
         Collin has the "traditional" kind of learning disability that you think of when a kid is having a hard time learning Math or reading. This is called a "Language Based LD". But, he ALSO has a "NON VERBAL" (nld) learning disability. NO this doesn't mean that he can't talk. Lord knows he can...this means that here is a great link that talks about what a NLD is http://www.ncld.org/ld-basics/related-issues/aspergers-a-nonverbal-ld/nonverbal-learning-disabilities-nvld. If you go here you will see the mention of Aspergs ( a form of Autism). I had mentioned to the Dr that all though I didn't think Collin had Aspergs every once in a while I saw a glimpse of it. She said that is part of the NLD..NO Collin doesn't have Aspergs, or any form of Autism, but because of my back ground that is why I was able to pick that up...it's part of a nonverbal learning disability. As if those two things (well 3 if you put the NF into it) weren't enough Collin ALSO has a "Visual Processing Disorder" It really is just what is sounds like. What he "takes in visually" is misinterpreted by him brain..so to speak, and just because that is not enough he ALSO has a "executive processing disorder" Here is a great way to understand what that is. Think of a secretary...they keep everything on task, running smoothly and on time and organized. Well the "secretary" part of Collin's brain (this is the front part of the brain) miss fires. It has a hard time staying on task, keeping all he is suppose to be doing organized. AHHHHHHHH it all makes so much sense. What we thought of as being flaky and in his own little world even at a young age was this the executive processing disorder! So, that is that...

 As for "What's next" well, Collin is about to finish up first grade. He will have to do the "extended school year" yeah..summer school. Can anyone guess how happy he is about that? NOT! (unlike his sister who thinks it's NO FAIR Collin gets to go to school in the summer and she can't).
   Collin had his eyes examined in December, but needs to go back again in June for a recheck and decide if glasses are needed. Most kids with VPD's wear glasses.

   In late June (the 26th) he will see a Genetics Dr to get classified as to what type of NF he has. As well as make sure there are no other kind of Syndrome's lurking. Then in Late July he will see a Neurology Dr. It is important we see the Genetics Dr first so the Neurology dr will know just what type of NF we are dealing with and what type of tumors we are looking for. He will more than likely..basically most defiantly need a MRI to make sure there are no tumors in his brain.

We are  on the "Wait list" for the Neuro phyc doctor who will be able to tell us EXACTLY the type of programs that will help a kid like Collin. Problem is he is number 134 (as of last week) on the wait list and it's a 8 month (or longer) wait.  Then in Feb we will go back and see Dr. Davis the behavioral specialist.

 So THAT is what is going on with Collin...all of this is curtsy of two little letter NF!!!! I hope to update this often and encourage you all to ask questions, pass this blog on to someone else or what have you!