A long over due update

WOW, it has been forever since I have updated this blog, which I guess given that this blog is about the trials and struggles of Collin that it's a good thing it's been a while!

School is in full swing and I pleased to announce that this year Collin LOVES school. He has an amazing teacher Mrs. Dietrich who makes Collin feel so good about himself. She is kind and understanding and has made a point to make sure she knows all about Collin and his NF and other diagnosis. I can't tell you how AWESOME it is too have Collin love school. Last year he hated it and cried every day he didn't want to go!

Collin joined scouting this year, and actually I am his Den (assistant) mother! Being a "Wolf " (that is the rank) has been great for Collin. Especially socially and even more so because it's a very small den, and all of our boys, thought it wasn't planned that way have some sort of Learning Disabilities. It has helped Collin not feel like the 'dumb' one. They are all on the same playing field, so to speak!

   That being said the NLD (non verbal Learning Disability) has become more and more obvious, especially when Collin is among peers of "typically developing" kids. I wouldn't be surprised if he does get the Aspergers diagnosis. I feel like I see the "social awkwardness" more and more. I'm not gonna lie and say that it's "easy". Some times I get so frustrated watching him act like what others would perceive as acting like a fool. Some times it's really hard to remember that it's him. Its part of it all. He has also become a little more fresh and defiant. I know some of it is his age, but things like refusing to make eye contact with us when we are talking to him about behavior, or just not seeming to understand why he is in trouble. It's like he doesn't get that HIS actions have consequences. But these are all things to talk about with the Developmental doctor in Boston...not gonna lie I haven't made a phone call to her yet to make an apt. Our doctor there Dr. Davis whom we LOVE has left, so I have had a hard time with wanting to switch him...


  What else is "new".......OH Collin got new glasses. Well sort of. He got the same frames but a slightly stronger lens. To which he immediatly said "WOW I can see so much better".  Our eye doc said that so far he see's NO noduals in Collin's eyes which I great because it's something we have to worry about with the NF1.

So that's it..nothing to exciting...but like I said that is good!

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