History

Saturday, February 7, 2009 4:46 PM CST

What a winter this has been, I don't think we've had everyone healthy since before Christmas. Noah was just diagnosed with Whooping Cough and based on his results and Anthony and Max's symptoms they say they have it too. Scott lost his job the end of January - the economy has caused lay-offs throughout his company.

Other than the whooping cough, Max is doing great. He's had a tough year at school but I'm proud to announce that he made the Merit List for this semester!!! He got A's and nothing lower than a B- and there was only one of those!!

So please say some prayers that we all get healthy and that Scott get's a job soon.

Thanks for checking in on us!!

Wednesday, November 5, 2008 1:01 PM CST

Prayers work! Our meeting went very well. We went in calm but with all the information we needed just in case, but we didn't need it. The meeting started with us going around the table to each teacher to discuss Max, when we got to the teacher we were having the problem with, she brought up the issue and gave her side - she didn't mention using the words "big boy" she used different wording, but did not deny saying "big boy" in her eyes she meant the same thing with how she gave the story. When i explained it wasn't and the problems it can cause, she was what I think was truly sorry and shocked. Either I'm an idiot and she's a really amazing actor or she truly was sorry for what she did - I lean toward her truly being sorry. It did however open us up to educate all of the staff on Asperger's and how to deal with these kids and they seemed very open and thankful for the information - even the handouts I had for them that I got from a book - it was the things Asperger's kids want you to know.

Thank you for your prayers - they do work.

Tuesday, November 4, 2008 8:55 AM CST

Were do I begin! We had an incident with Max's history teacher on Thursday and I have a meeting with the school about it today. This is the first time I've felt calm enough to write about what happened.

Because of Max's muscle weakness he has written in his IEP that he is allowed to keep his books in his classrooms, he is in 7th grade. On Thursday his asked his History teacher if he could keep his workbook in her room since he didn’t' have any homework in it, her reply was "No Max you need to learn to be a big boy." Max replied "But I'm allowed to keep my books in your room, it's in my IEP, I keep my other books here." she then said "Well that is going to change too." This bothers me on so many levels, one, he has muscle weakness and it is in his IEP that he should be allowed to leave them in her room. But mostly it bothers me because she told an Asperser's child to be a "big boy". In my opinion that is like telling a child in a wheelchair they need to learn to walk or a diabetic child that they need to learn to live without their insulin. Also, "a big boy" does she realize what this boy has been through - the brain surgery, knee surgery, MRI's, EEG's, doctors appointments - he has dealt with it all better than any Adult I know!

Our meeting is at 12:40 and I have a few phone calls out to the Federation for Children and the Asperger's Group of New England to find out what our rights are. This teacher needs to either stop teaching - doubt that will happen - or attend sensitivity training on how to deal with special needs children. I also want to get her to apologize to Max for speaking to him in this totally unacceptable manner.

I'm really still in shock by this situation, in the 8 yrs that I have been dealing with the schools, I have never, ever had one problem with a teacher, they have all been amazing with Max.

Wish us luck!

Thursday, September 4, 2008 8:15 AM CDT

First day of school was yesterday. I can't believe our Max is n 7th grade!!! We are looking forward to getting to know his teachers and too him having another great year. He was very nervous this year, but survived the day with only a few bumps.

Noah and Anthony are now in 3rd grade and their first day was good too. They are again in seperate classrooms - they prefer it that way.

On the Medical front things are going well, no problems to report - YEAH!!!

Scott is once again trainging for the Boston Marathon and will be running 2 races in September - Steps 2 a Cure for NF and the Doug Flutie run for Autism.

Thanks for checking in!!!

Sunday, July 20, 2008

So sorry for not updating in so long, summer has been fun filled and busy. Max had his yearly appointment with Dr. Plotkin the beginning of the month and the news was GREAT!!! He said he's pretty confident we can go every 2 yrs for MRI's as long as we are comfortable with it. I'm a little nervous, but will try it out and see how it goes, he said if I feel we need one sooner that we can do it.

Max is doing great and getting so big! We are slowly figuring out the Asperger's thing and the insights it has given us into Max and dealing with some things with him.

We just finished a week at VBS (vacation bible school - I taught again this year) and we are looking forward to vacation!! Gramma and I are taking the boys and my niece to Storyland for 3 days the end of this month then Scott and I are taking the boys and my niece to the Cape for our yearly trip.

Thanks for checking on us and enjoy your summer!!!

Sunday, April 20, 2008 6:48 PM CDT

Tomorrow is the day!!! Scott will be running in the Boston Marathon for Max. I am so unbelievably proud of him and know he will not only finish, but have a time that will shock everyone! Please say a prayer for him and if your on the course look for him in the White/Red NF Bib with Max's picture on the back!!! If you want to follow him online his bib number is...

23864 and you can track him online tomorrow at http://www.baa.org Thanks to all who donated on his Firstgiving site and for those who still want to it's not too late! http://www.firstgiving.com/scottrunsformax

Scott ~ Run Babe Run!!! We Love You!!!!

Thursday, February 21, 2008 3:52 PM CST

We are getting close to the Marathon and Scott is still going strong - training and raising money. Thanks to all of you who have donated and to those who would like to please click the link above to his fundraising page.

Now Max news....

Our boy has yet again been named to the Honor's List at school - yes that makes 2 for 2!!! We are so unbelievably proud of him, he's been working so hard and doing so well.

He also got the confirmed diagnosis, Max has Asperger's. This is both Good News and Bad News- the Good news is Max has Asperger's, the Bad news is that Max has Asperger's. How can this be both Good and Bad news? Well, it's bad because Asperger's is on the Autism Spectrum, and Autism is a scary word. The good news is, Asperger's is High Functioning Autisum and he can live a perfectly normal life with it - they believe that Einstien actually had Asperger's. It's also good because it explains so much of why Max acts the way he acts and for me has taken away alot of the frustration I have with him because I now have an answer as to why he is the way he is. The diagnosis has given me so much patience and calmness when dealing with him, I've found an whole new way of dealing with him and speaking with him and it's really working.

Max's therapist and I sat down with him and told him about the Asperger's. He took it very well. He was of couse frightened and confused, but he listened and asked questions and I think has a good grasp on it. He was excited when we started telling him about people who have AS like Einstien, Andy Warhol, Hans Christian Anderson, Isacc Newton - most highly intellegent people! We are learning what we can and trying to reteach ourselves some of our parenting skills as you parent an AS child a bit differently than a child without AS. But so far so good!

Thursday, December 27, 2007 6:51 PM CST

Happy Holiday's! We had a great Christmas and are looking forward to a "quite" New Years celebrating as a family, just the 5 of us with Lobster for dinner and party poppers, confetti and horns. I am always a little sad to see a "good" year go and worried that it may be followed by a "bad" one. Max has had a really good year this year, no major issues or problems and it makes me a little nervous to welcome in 2008, but I'm going to do it with a positive attitude and the hope that we are on a roll!

We end 2007 with good/bad news - the Good news is we are 99% sure that Max has Asperger's, the Bad news is we are 99% sure that Max has Asperger's. How can this be both Good and Bad news? Well, it's bad because Asperger's is on the Autism Spectrum, and Autism is a scary word. The good news is, Asperger's is High Functioning Autisum and he can live a perfectly normal life with it - they believe that Einstien actually had Asperger's. It's also good because it explains so much of why Max acts the way he acts and for me has taken away alot of the frustration I have with him because I now have an answer as to why he is the way he is. The diagnosis (or closeness of the final diagnosis) has given me so much patience and calmness when dealing with him, I've found an whole new way of dealing with him and speaking with him and it's really working.

Well that's it - I wish you all a very Happy and HEALTHY New Year. I thank you for continueing to check in on our boy. Finally, for all of you dealing with a "special" child, I thank you for sharing your strength.

Wednesday, August 29, 2007 7:26 AM CDT

Well we are now the proud parents of an HONOR ROLL STUDENT!!! Yes our Max was named to the Honor List at school. In order to be on the Honor's List you have to have A's an nothing lower than a B. We are so unbelievably proud of Max, he worked so hard and deserves this more than anyone I know. His Dad and I got to attend a special Honor's Breakfast at his school were the Principal past out certificates to the students. It was one of the proudest moments I've had as a Mom because I know what it took for him to acheive this goal. The principal challenged the kids to make the list for the next 7 semesters left in Middle School and to move up to the next level - Max's next goal is Principal's List which is all A's and nothing lower than a B ...I bet he'll do it!

***Scott is running the Boston Marathon for Max in April. We need to raise $3,000 in order for him to get a number - the entire amount will go to Neurofibromatosis Inc. NE. We found we can have people send us a check made out to Scott and then we can send one of our checks to NF Inc and Scott's company will match the donation. By doing this we only have to raise $1,500 in order to get the number! We still want to set the goal at $3,000 but we want Scott to be able to get Scott an official number! There is also a link above on the tracker where you can go and make a donation online with your credit card.***

Wednesday, July 11, 2007 1:32 PM CDT

Well Max Rocks!!!! He had his MRI on Sunday at 5pm after spending the day at a family party and he did awesome! This is the first time he's had an MRI without sedation and he did great - didn't move once. They had to have him sit still for 6 minutes at a time for at least 8 times and he did it. He even had to have a shot of dye so they could check his 3rd vent from his surgery to make sure it's still flowing well and he didn't scream!

Now the really good news - the scan looked great and he's doing really well. The doctor even said after next years scan we may be able to extend the time between MRI's. The tumor has been stable for all these years so we aren't to concerned about it growing anytime soon.

Thanks for all of your thoughts and prayers - we can feel them all!

Wednesday, July 4, 2007 8:49 AM CDT

Happy 4th of July!!! Hope you all enjoy the day and are safe. We are spending it with my parents who are coming over for a quiet BBQ.

Max is doing well. I think he's really enjoying being out of school and not having all that pressure on him. He goes on Sunday for his MRI, this will be the first one he has withou sedation. I spoke with him about it and he feels he can do it so we are going to try it. I know it's strange to have it on a Sunday, but we have an appoinment with Dr. Plotkin on Wednesday. Please send some prayers and good thoughts for a clean scan - I'm a little worried about this one - no reason just Mom's gut talking, but I'm sure it will be fine.

Thanks for checking in on us!

Sunday, April 15, 2007

Well it's April and that means marathon time! This year,Paul Danehy the husband of Dianne the school nurse at the elementary school here in town is running the Boston Marathon in Honor of Max. If you can please click on the link above and make a donation to suport him.

Also running for NF is Max's Dad Scott. He will be running in the 3rd Annual 5k sponsored by the Gold's Gym in Millis. If you'd like to support Scott you can go to

www.firstgiving.com/scotts5kfornf

Tuesday, March 13, 2007 5:02 PM EST

Hi All

Today was a difficult day. Our friend's daughter Lindsey came to the end of her battle against cancer which was the result of her NF. I don't use the word "lost" because I don't believe Lindsey "lost" her battle, she won by earning her wings and moving into God's arms. She was an amazing and inspiring young woman who was loved by so many.

On a lighter note - Max is doing well. He got his progress report yesterday and it was great! His grades are rising since last report card and he's really thriving!

Thanks for checking in!

Tuesday, December 19, 2006 6:51 PM CST

Max got a part in the play!! Well not a part, part, but he was picked for the Ensamble and he has a part within the Ensamble, he's going to be the Eggman. I believe he also will have one word to say "Bonjour!" - it's the scene in Beauty and the Beast where they are going through the town. He's very excited and we can't wait. The play is in March.

The kids are very excited for Christmas - although the past couple of days have been spent with a virus going through the house, we are praying it's gone by the weekend.

Hope everyone has a Happy Holiday!!

Wednesday, December 6, 2006 8:55 PM CST

Sorry I haven't updated in so long. Max is doing great! Got his report card before Thanksgiving and got all A's & B's - yupe our boy finally found a way to get all those smarts on paper!!!
He tried out for the production of Beauty and the Beast through the Millis Theater Group, he tried out for Chip. He goes back tomorrow for Vocal try outs. He did really well with the dance auditions tonight - I couldn't believe how fast he picked up the steps. We find out next week if he gets a call back. The play isn't until March, but the Theatre Group is a big deal so we are excited.
He's almost done with his Cub Scout requirements and will become a Boy Scout in February at the Annual Blue & Gold Dinner. He is growing up so fast and he really amazes us daily - drives us crazy too!! :)
Hope you all had a Happy Thanksgiving and have a Happy Holiday Season if I don't get the chance to update before then.

Monday, October 2, 2006 2:36 PM CDT

Max did wonderful at the hospital. They did a 5 day EEG plus a sleep study on him. Ends up they don't think it's seizures, they think it is night terrors. So he's off the seizure meds - which is great! - and we'll go from here. It will take about 2 weeks to get the full results, but it all seems to be worth it and good news.

Max was really unbelievable the entire week! As you can see from the picture he had wires attached to his head and then had his head wrapped and was like that for the whole week. The wires were also attached to the wall so he couldn't go any further than 20ft which was basically his room. He was unhooked on Wednesday but that was to take him up to the sleep lab and then plug him in there and add more wires and straps around his chest. He truly amazes me, I could never have done it for 5 days!

His Aunt Beth was nice enough to take off a day from work to spend a night with him to let me go home and see the twins. She was there Wednesday when he was in the sleep lab and the Doctors were so impressed with her knowledge of Max and her ability to calm him and comfort him. THANK YOU AUNTIE BETH!!!

Sunday, August 27, 2006 10:57 AM CDT

Well the decision has been made and the papers have been signed. Max will be going to the Middle School in Millis. After alot of thought and listening to everyones thoughts and opinions, I decided that this is the call to make and Scott supports me. I think with Millis being a small school that they can do everything they say they can for Max and I will be meeting with them on a regular basis to make sure they do. I figure if I stay fully involved and talk to the school at least every 2 weeks (face to face) and more often through email then Max will be taken care of.

This was not an easy decision and I held off as long and possible to make it. It's not easy to hold your child's future and emotional well being in your hand alone and have to make a decision that could change the outcome. I'm so grateful to everyone who has supported us and who offered their advice and opinion. Whether you thought Learning Prep or Millis, we needed and appreciated eveyones opinion.

So school starts Tuesday and we'll let you know how it goes!

Wednesday, July 12, 2006 8:56 PM CDT

Thought I'd update on Max's school situation:

I have some very interesting news regarding Max's school situation. I was given the name of a lawyer named Bob Crabtree who I was going to hire but decided to talk to the school one last time. I contacted Susan Donelan to ask if she had set up the meeting we requested for the end of July and she said she wanted to me with me one on one to discuss some ideas she had for Max.

This is what she presented:

She spoke with the Superintendent about Max because she was not feeling right about keeping him here for 5th just to have him go to LP for 6th. Together - mostly on Susan's part - they came up with a plan of creating a "Learning Center" for the Middle school that would start in 6th grade, run through 8th and would be like a Learning Prep within the school. It would not be your typical "Resource Room", it would be headed by an Intensive Special Ed Teacher (who they already hired from a Special Ed School) and Max would be "used" as the blueprint for creating the Center. Everything would be tailored to his needs and learning style. The Center wouldn’t be just for him, but he would be the basis' for it and in the short run it would cost them more than sending him to LP but in the long run it would save them from having to send other's to LP or other outplacement schools. The Center would work as a classroom. Max and other students would get their schedules like everyone else. They would have some classes in the "regular" classrooms and others would be taught in the Center. For example, he might have Science and History in the "regular" classrooms and would go to the Center for English and Math. They would tailor his schedule so he would rotate around between the two and if we feel it is needed he would get an aide for the classes he has outside of the Center.

In speaking with Susan, I truly trust her and believe her and believe that she is not doing this because of money, but because she truly wants Max and others like him to stay in the public schools - her biggest concern is he won't be able to come back. I might be crazy, but I trust her and I told her that, I told her there have been many times where I've thought people where just talking but that I believed what she was saying and her response was a good one. I asked her for a copy of her proposal for the Center so I could have a better idea of how it would work and she is going to send me one.

I also brought her some copies of work he's done at home compared to work done at school and she was very shocked at the difference. I told her I didn't understand how the work at school could look like it did when you looked at what he did at home and she agreed. I suggested and believe that it's because he gets more help than he should because he's so well liked and that more focus needs to be put on teaching him to do it himself.

All in all it was an excellent meeting and my gut is telling me to go this route.

I feel like a court, lawyer or anyone would think I was nuts to ask for more and I really like the idea of keeping him in town. I spoke with him (Max) about it and he's happy with the idea.

I'll let you know how it all turns out - I'm waiting to hear from Robyn (our advocate) to see what she thinks and to have her review the IEP. But, I think this has turned out better than we ever imagined.

Friday, June 23, 2006 8:36 AM CDT

Hey All

Max and I went to Learning Prep on Tuesday and he loved it! They tested him for Occupational Therapy and decided that LP would be a great place for him so he is offically accepted!!!! He is so excited and has asked every morning when he gets up if "they" (Millis) said he could go yet.

I spoke with the school after our LP visit and told them we have decided that LP is the place for him, but they are still fighting us on it - although they still pretty much agree that he'll need to go for 6th grade, for some reason they are still trying to keep him in Millis for 5th. As a tax payer I truly understood their fighting up until this week - we are now at a point where I just can't comprehend their reasoning for keeping him here. The emotional damage that it will do to him to have him transfer to the Middle School this year and then move to LP next year just seems so crazy and actualy cruel - why put him through this when we know he's ready and willing this year. I also, just don't believe they will be able to do what they say they can and I'm not willing to chance that they fail and Max ends up suffering - how long do we keep this going? It's been 4 years of them trying their best and it's just not working. I would love to keep him here as long as possible, in my heart it kills me that we need to send him to LP, but in my mind I know this is what is right for him, it's what will give him the future he deserves.

So the question I'm sure your all asking is "Where do you go from here?" Well I'll be calling a lawyer today - got the name of a really good one and hopefully we will have this all settled before the end of summer. I hate that Max is stuck in this "unknown" holding pattern - it's hard not knowing where he'll be in the fall. I just want it settled so we can enjoy our summer.

I'll update when I have more news. Thanks for all the prayers and good thoughts.

--------
In other "news" - last day of school was yesterday and it went great. I went into Max's class and brought pops for the kids. I don't know how the 4th grade teachers do it - I know I'll miss those kids and I'll probably see more of them than the teachers over the years. This was just such a great bunch of kids. I also went in to say good-bye to Max's specialist, I'm sure I'll see them with the twins in school there, but not like I do now and they are just the best group of people, we are very lucky to have them.

Did an end of year pool party at our house yesterday - ended up being just a "kindergarten party", called about 4 of Max's friends but none where home so we'll do one for his friends next week.

Well that's it for now - thanks for checking in on us.

Tuesday, June 6, 2006 7:41 PM CDT

Hey Guys - thanks for all the support! The meeting lasted a little over 2hrs. We didn't win, but we didn't loose either - honestly don't think we are at a win/loose junction. We are sort of in a holding pattern. The director of Special Ed was actually a plus for us (at least she came across that way). She actually used to place kids in Special Ed schools before she came to our town so she knows all about the school that we want Max to go to. She felt they can give Max everything the private school can and on paper it looks good. I'm just not sure it can be transferred from paper to reality. . She also came up with a lot of the adjustments that we came up with for Max if he does attend the Public School.

After all of the modifications and changes they've made for Max it looks like they may (key word MAY) be able to do it. I also had the chance to meet Max's main teacher and I like her alot - (not surprising, all his teachers/specialists so far have been great and worked with Max to the best of their abilities)- and if she's the one who will be incharge of his education for 5th grade, I think he'll have a chance at doing well. Also, although he won't have a private aide he will have an aide who follows him around to every class - most times aides stay in the same classroom with the same teacher and the students rotate - this way Max will have a familiar face with him at all times. They will also hold his books in each classroom instead of having him keep them in his locker and will have a set for him to keep at home so he doesn't need to remember to bring them home. There is also a whole list of other things they will do for him.

Now that's not to say we will accept the proposal - actually just the opposite is how I'm feeling. We are going to LP on June 20th for them to eval Max and see what they are like. I believe we are pretty set for him to go to LP for 6th grade and beyond - the school seems to be agreeing to that - it seems 5th grade is the only question. To be honest I don't know how I feel - it seems like an awful lot for them to have to provide and a lot for Max to have to get used to, but it might work. I guess now we have to decide if it's going to be worth the chance. Right now I say no, I think we've waited long enough and it's not going to be fair for Max to have to "squeak by" (quote from the SP Director at the meeting) for one more year. I feel like if he's going to be changing schools he needs to go to LP now and not in 6th grade, how do we have him transition to 5th grade and to all the accomodations just to have him moved out to LP in 6th grade. It's also not like the accomadations can be transferred to 6th grade so we are at step one again when that time comes. Also, I'm not sure it's fair to Max emotionally to put him through this big of a transition just to put him through another big one in a year.

I'm just very confused now and will make my decision once I see and speak with Learning Prep in person.

Monday, June 5, 2006 3:07 PM CDT

Tomorrow is D-Day! We go meet with the school to fight for Learning Prep. Please say some major prayers that they realize what Max needs and allow him to go to a school that will give him that. I've already warned the family that I'm not leaving until they agree so they better have bail money ready because they'll have to take me out in handcuffs before I quit.

Max had his MRI Wednesday and we don't have the full results yet. Dr. Plotkin needs the old films (which I mailed today) to compare. But I spoke with him and he didn't see anything concerning when he looked at the films from Weds. so we just need to compare the size of the tumor to be sure it's stable.

I'll update tomorrow - GOD willing, I will be posting that Max is going to Learning Prep!!!

Wednesday, May 24, 2006 4:07 PM CDT

Well we got the results of the Neuropsych Exam. They look like they will help us alot with our case against the school. Between the report and the letter we will be getting from his Private Speech Teacher, the fight shouldn't be quite as hard. I still think we are in for a good one, but I'm not leaving our meeting until Max is approved to go to Learning Prep - he needs it and he wants it.

Our meeting is on June 6th so please say some prayers and wish us luck!!

Sunday, April 30, 2006 9:07 AM CDT

HAPPY BIRTHDAY TO OUR MAXIE BOY!!!!!! It's hard to believe that it was 10 YEARS ago at 10:42pm tonight that our world was blessed with our awesome Max. I can honestly say that I wouldn't change a thing over these last 10 years - it has all made Max who he is and he is one awesome, kind, amazing kid!

HAPPY BIRTHDAY MAX!!!

I love you!!!!
Momma

Friday, April 7, 2006 7:50 PM CDT

Wow - what a week. Started out Monday with Max taking his first of what should have been 3 MCAS exams. Well he missed Tuesday because he was in Boston from 9am till 2pm taking a Neuro-psychological exam (it tests is cognetive skills - shows how his brain works/learns). Then he had CCD, then he got sick. Turns out he has strep so he missed Wednesday and Thursday also. He missed Friday because of his appointment with his Neurologist - they decided to do a 72hr admitt monitor him and see if they can figure out what is going on with him. They are happy the Tegretol is working but not happy that they don't know why or what it's working on. The EEG came back negative for siezures. They will also do a sleep study on him while he's there.

Next we move on to Noah who we found out after we took Max to the orthodontis for new elastics - also has Strep. He was warm and acting out of sorts so I figured Dr. Kinder and the ortho share a parking lot why not run in to Kinder's - well good thing I did!

Scott also has strep - pretty bad, so he's on antibiotics also and all 3 are driving me nuts!! Thank God for Anthony!!

Well that's it - ohh - Max will be home Monday too, if I send him he'll have to spend the entire - and I mean entire - day taking the MCAS to complete the 2 he misse and have them sent in by Tuesday. IF I don't send him Monday, the principal can mark him as a Medical Excuse - so we are taking that option instead of making the kids suffer.

We get the results to the Neuro-psych on Monday and I'll update then.

Thanks for checking in - please sign the guestbook :)

Sunday, March 5, 2006 8:44 PM CST

Hi

Thanks for checking in on us. Not much has changed, we did schedule Max's neuropsych exam and that will happen on April 4th. It will be approximately 3 - 5 hrs of testing -it is all to find out how he learns. We are still pushing for the private school and this exam should be the key.

You may have noticed the bookmark up above. I started making these today and will be selling them with 50f the proceeds going to NF Inc. I've felt like I've not done much lately and this gives me something productive and fun to do. I'm also going to take special orders in case anyone wants a special charm or a personalized bookmark.

Eveyone is doing well, all the bugs and colds seem to be gone - for now! (knock on wood) Thanks again for checking in on us. Please be sure to sign the guestbook.

Tuesday, February 21, 2006 9:14 AM CST

Hi all. Not much new here, we are still fighting with the school to get Max into a private special education school in Newton. Right now we are waiting for a new meeting with the school since we rejected his IEP. The teacher that my sister works with is acting as our Advocate so we are hopeful that Max will get what he needs. I understand the school needs to fight us to a point, but what parent would WANT to send their child to a special education school - I would give anything to have him be able to stay in the public schools with his friends.

In other news - Scott started his new job and loves it, he's happier than I've ever seen him. The boys are doing great, Noah just got 2 yellow stripes on his Karate white belt and will be going for his yellow belt in a few weeks. Anthony is taking a Hip Hop class starting on the 28th and is very excited for it.

Thanks for checking in on us!

Friday, January 20, 2006 7:33 AM CST

Where to begin...Max is having such a hard time lately. He's been working so hard for so long and getting no where that I think he's just given up. I think he feels he has no control in his life and it's just making him crazy. He's crying all the time, fighting us on everything and just plan exhausted. We are lost as to what to do for him anymore, it seems like nothing is working.

We have his IEP meeting on Thursday and we are going to push for a private special education school. We found a great one in Newton that we think will really make a difference in his life. We actually told him about it and to our surprise he is thrilled! He can't wait to go to a school where everyone is like him and he won't be the only one who has to work so hard. He even went to school the next day and told all of his friends about it. Had you asked me I would have told you he would flip out, but he did the exact opposite. It really made us realize how hard of a time he's having. He's so good at keeping it all in that we had no idea.

WE are going to find him someone to talk to about all of this. He actually aske the other day if he could go see "a nice man" - that's what we called his last psychologist. So we'll start that on Monday when the new insurance kicks in - thank God for Scott's new job!

Well that's it. Please pray that he finds some releif and that we can get the school to put him into this new school.

Friday, January 6, 2006 7:13 PM CST

Hi Everyone - I hope you all had a great holiday season. Our's was very nice and the kids had a great time.

Max had his second set of teeth pulled today - thank God it's the last of that - he did awesome but had to have about 5 shots and anyone who knows Max knows he hates shots - he can do anything else but shots. He has total anxiety attacks - he always says "oh that wasn't bad" after but its the whole work up.

His EEG came back negative, but since the Tegratol is working the Dr's are just assuming seizures. I definately agree with that and can really see a pattern to them now, not as often and definately not as bad - YEAH!!!

Saw Dr. Plotkin on 12/27 - everything went great, he's such a God send to us! I'm actually working on finding a way to get him $20,000 for a clinical trial he wants to do - he needs the money to by the medicine - he wants to test a cream med on surface tumors.

Next appointment is with Dr. Cash on 4/7 and we see Dr. Plotkin again on 4/25.

In other news - Scott (DH) has found a new job!!! We are doing the HAPPY DANCE here!!! His job now changed the insurance as of 1/1/06 to 80/20 coverage with a $900 deductible and out of pocket of $6,000 - BUT knew job has a great plan and the job itself is more challenging for Scott - it's all the things he's really good at in Transportation! He starts on 1/23.

Well that's it for now!

Friday, December 23, 2005 6:38 PM CST

Just wanted to take a moment to wish everyone a Merry Christmas or Happy Hanukkah. We also are praying that everyone has a Happy and Healthy New Years.

Thank you to eveyrone who has filled out the form on the Today's Show's webpage to have their Green Room Book Sale monies given to NF Inc. I think it's great they are allowing nominations for the sale!

Max is doing ok. He's been a bit off and we are having some problems with him and his school work, not sure if it's become laziness or if he's having other problems. We will be talking to the school after vacation to see what we can do. He also has an appointment with Dr. Plotkin on the 27th and is having 2 teeth pulled on the 29th - so vacation will be busy.

Tuesday, November 22, 2005 7:51 PM CST

Max had his EEG yesterday and did amazing! They put us in a room and hooked him up to the electrodes then turned the lights down and left the room. He had to lie in bed for about an hour with his eyes closed, no talking and had to do a panting breathing for 3minutes (not easy I did it for about a minute with him and it was tough) - but he was GREAT!!! He even managed to fall asleep which was perfect. We don't have the official results yet but I did ask the tech if she saw signs of previous seizure activity and she said yes - so it looks like that's what has been going on with him for the last 1 1/2 years.

I'll update again when we get the official report.

Friday, October 7, 2005 4:05 PM CDT

What a weekend! Friday night was our Benefit Dinner and it went great! The food was amazing (thank you Jackie), Pa's speech was wonderful and Scott once again was a hit with the microphone. I was thrilled with the number of people we had and all of the new faces that showed up. We were very sucessful and raised $3,000 - it was a great time and we can't wait for next year. Planning will begin in January!

His next appointment is on November 1st with a Neurologist and to have an EEG.

Friday, September 23, 2005 7:57 AM CDT

Well looks like the Tegretol isn't working or it takes more than a week to work. Max was a mess this morning when I sent him to school - eyes glazed, speech slurred and totally wound up - talking even without anyone tot talk to. I emailed the Dr. this morning and am hoping he has some encouraging suggestions or information.

I was so excited for this to really help him. I know I shouldn't have gotten my hopes up but it's so hard - he's living in this fog and doesn't even know it.

So I guess we wait AGAIN - wait to see if this was the wrong drug, if it wasn't a high enough dose or if seizures aren't even his problem.

Friday, September 16, 2005 6:50 PM CDT

Max saw Dr. Plotkin on Tuesday and Dr Chung (infectious disease) on Wednesday. Both agree they do not believe the Lyme is a problem or that it has become chronic. They think it may be petit mal siezures (SP??). So we have an appt on November 1st for an EEG and a meeting with a new neurologist who specializes in Epilepsy.

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Just got a call from Dr. Plotkin. Seems he's been thinking about Max and decided we had a few things we could do with his situation. We can assume these are small seizures and put him on meds and still do the EEG and have him see Dr. Cash (neurologist - specializes in Epilepsy) or we could just wait until we see Dr. Cash in November. After asking if the meds would effect the results that Dr. Cash will see - the answer is no - we decided that we would put Max on the meds. There is no need to have him go through another month like this when the meds may help. IF they don't we will go from there - could not be seizures or could just need new meds.

So....Max will be starting on Tegretol tomorrow - it's like dilantin.

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Monday, August 29, 2005 11:37 AM CDT

It's hard to believe school starts tomorrow and Max will be in 4th grade!! I can't believe how fast the summer has gone. Of course Max and his brother Noah decided that it went by a little to easy. Last week they both decided to get sick. Max was diagnosed with Lyme Disease AGAIN! They are not sure if it's a new case or if his old one has gone chronic - we find out in 10 days when the full blood test comes back.

Noah who starts school on the 6th with his brother Anthony - both are going to full day kindergarten :( - decided to scare us with a very bad headache and eye pain. The dr's aren't sure if it's just migraines or if it's his hydrocephalus kicking up. We have some tests to run to find out.

Anthony is doing great - healthy as can be (knocking on wood) and they are all looking forward to starting school.

I'll update as soon as we get any info on either of them.

Monday, July 11, 2005 8:04 AM CDT

Well we got the results of Max's CT Scan and as I though - no news was good news!!!! The scan came back normal! So now we wait for him to have an episode and he will be put into the hospital for 72hrs for an EEG. He's had a few episodes since we decided to do this but one was the last week of school and the other was around the 4th of July and I didn't want him to miss that, so we'll wait again :)

Thanks for all the good thoughts and prayers!

Sunday, June 26, 2005 7:58 PM CDT

Max had his CT Scan on Friday, he did great! Took all of 10 minutes and then Gramma, Max, Anthony, Noah and I explored Boston for the rest of the day. We had a great time, hit the top of the Pru which was a blast. They now give out radio like devices that when you get to each window you punch in a number (100's for adults, 200's for kids) and you get a personal guide. They will say "now look out in front of you and see the big building with the red roof, that is.....) The kids loved it and learned alot. We then walked about 3-4 blocks over to the Hard Rock Cafe - ended up walking through a big demonstration for the Vietamiese (SP?) President who was in town - Police everywhere, caravan of secret service and limos going by - very interesting. Kids loved the Hard Rock! We then walked back to the Pru to get the car and were off.

We really had a blast and can't wait for our next adventure!

I will post when we get the CT results - but so far no news is good news.

Friday, May 20, 2005 12:54 AM CDT

You wouldn't believe our week! After Friday Max spent Saturday in bed then went to a birthday party at the Imax in Natick. He woke up at 3:30 am on Monday morning sick as a dog. We ended up in the ER in Framingham for dehydration then they sent us home and 2 hrs later we were in an ambulance on the way to Norwood because his temp hit 104.5 and he couldn't even keep a Tylenol tablet down. We spent 3 days in the hospital and just came Wednesday nite. Ends up he has what's called Rotavirus and it looks like the other two have it also but not as severe.

Max seems to be doing well now and we all spent the day in Momma's bed relaxing - I think we will stay there a few more days then everyone should be back to normal. Both him and Anthony are back on solid foods but now Noah is in the middle of the worst of it and hopefully will be better tomorrow.

They don't believe the episode on Friday is at all related to the Virus so we still have to deal with that once this is over. We will be doing some monitoring either in the hospital for 72hrs or at home with a portable monitor the week after next.

I have to say the best thing we ever did was buy this duplex and make Millis our perminent home. The people in this town are amazing - everyone from his classmates to Noah and Anthony's classmates parents to the people we wait at the bus with has called to check on him and the boys. Max's baseball team even signed a baseball for him. We are truly blessed to be a part of this town.

Friday, May 13, 2005 6:11 PM CDT

Well Max gave us one good scare today - it certainly turned out to be Friday the 13th for us. I just finished working out and was in the process of getting dressed for the day when my phone rang and it was the principal of his school calling to tell me Max had a medical issue while in art - he was alright and the nurse was with him but wanted to know if I could come down - it was not an emergancy. Well I get the kids to my neighbors house and head to the school were I see an ambulance in the front and his teacher walking towards me. I got in the ambulance and found out he had passed out in art class for 45 - 60 seconds and bumped his head when he fell. We went to the local hospital were he was checked out and his neuro was called. The ended up discharging us because his neuro knew we could take care of him. We are now watching him over the weekend then calling the neuro on Monday to set up a hospital stay to monitor him on EEG's and with video's to see what the heck is going on. Everyone agrees that it was most likely a siezure - I think it was somewhat of a Godsend since now we will finally get some answers to what's been going on with him.

His school was amazing - the principal's call was calm and perfect and his teacher and the nurse are just the best!!! I can't express how wonderful they all were and how grateful we are. I went back to the school when we got home and found out the kids all went back to class and made him SpongeBob pictures and letters. They were all very scared because they know all Max's problems but were all very brave!

I'll update as soon as we have any news ;) Thanks for checking in.

Thursday, March 31, 2005 6:14 PM CST

Thought I'd update you all on Max's MRI that he had Friday. He did very well. We stayed at Gramma and Pa's house last nite so we could sleep a little later and Pa and I took him in. He had a bit of a reaction to the cocktail they gave him and was very combative when we got to recovery. I had to climb into the bed with him and hold him back from trying to get up and walk. The nurse was nice enough to let us leave right away since we were sure that he would be fine once we left and low and behold he was much better once we were on our way.

We haven't heard any results and we are happy because no news is good news as far as we are concerned. I will update you all as soon as we get any news - probably tomorrow or Monday.

Thanks for all the good thoughts and prayers.

Please check out the link below for his Marathon Team :)

Wednesday, March 9, 2005 8:11 PM CST

Boy lot's to update. Max saw his Neurologist and he took him off of his Concerta thinking that may be his problem. He's been wonderful off it - not sure that's what caused the episodes but I don't think I'll put him back on it because he's learned how to control himself without it and is doing great! His teachers are the best and are updating me on his behavior - thank god for them!

Saw his eye doctor on Thursday - he did great - reading lines he shouldn't be able to read! He did find lisch nodes on his eye - they are cafe au laite spots on the eyes that cause no problems - they just are another confirmation that he has NF - tell us something we don't know!! :)

He's scheduled for his MRI on the 25th at 9am - FINALY!!!

Regarding the hospital: I received a call the day after I sent the letter from the Public relations person. She had received an email from the CEO and a copy of the letter from the head of the ER. The head of the ER was doing a full investigation. Scott (DAD) received a call from Max's Neurosurgeon on Saturday. He apoligized for the problem, was very upset by the whole situation and said that the head of Neurosurgery was having a meeting on MOnday with the doctor and group about it to investigate it further. So...lesson learned - they may not be able to do anything for us because of our letter but hopefully the letter will save another family from going through the same thing. ALWAYS SPEAK UP!!

Thanks for all the support!

Wednesday, February 23, 2005 7:04 AM CST

Well I've just got up after a nite of the most horrible and demeaning experience of my entire life. For the past 4 months Max has been having strange episodes that the doctors have not been able to figure out. Also, over the past 4 weeks he has been having temperatures that run anywhere from 97 degrees to 100 degrees. After a repeat episode over the long weekend and a day of lethargy, ashened coloring and a quick onset of a fever of 99.8 I contacted his pediatrician. The pediatrician told us to go to the emergency room at Floating – he, as I, felt it would be good to have him seen in the middle of an episode. Once there, Max was looking and acting much better. We explain to the extremely rude and dismissing doctor Max’s history and the fact that we were in the process, with Dr. Heilman, of trying to schedule a MRI to check on his tumor and rule out the possibility that the tumor was causing the problem. The doctor left the room, returned and asked me a question then proceeded to walk out of the room during my answer. There was a very pleasant medical student working with this doctor who took the time to apologize for the other doctors action. We did not see this first doctor or the medical student again during our stay.

We then were greeted by the Neurology PA who was on staff, I believe his last name was Robbins. Mr. Robbins walked in with his arms gesturing up and down asking “So what’s the emergency?” He continued to be demeaning and sarcastic throughout the rest of our time in the Emergency Room. He basically treated us as though we were there trying to push our way into an MRI. Like I’m going to have my husband give up a night of work, pull my sister out of work and drive the 1hr ride into Boston, because I can't wait a week for an MRI. This PA did not even look into Max's eyes to see if there was any fluid build up or problems. The first Doctor did not check Maxwell’s eye’s either.

Sooo needless to say - every big wig at the hospital will be getting a letter in regards to the whole thing and we will be working on finding other people to treat him.

Friday, February 18, 2005 7:27 AM CST

Been awhile since I updated - so here we go :)

Max saw the ortho the other day and has been okayed for braces!!! So he'll be getting those in the next few months. The ortho was amazed at the change in his teeth from his speech therapy - so his hard work is paying off!

Max is doing well. He will be having his yearly MRI soon - actually just waiting for them to call with a date. We've moved it up from next month because he's just been off and having those episodes again.

He had his Blue & Gold on Sunday nite. It went great - my girlfriend and I made my Aunt Felicia's ziti lasagna for the dinner (6 big tins - plus 2 of regular ziti with sauce!!) and everyone loved it - I know she was smiling down that she got to be part of it. He earned his bear patch and a gold and silver arrow. Pinewood Derby is up next in March.

I'm hopefully going to DC in April to take part in a Defense Department Consumer Review program for NF Research - I have the final phase of interviews this month to see if I get chosen - it sounds amazing. Max and I are also hopefully heading into Boston on the 25th to talk to a group who are running the Boston Marathon to raise money for NF.

Well that's it for now - thanks for checking in!

Thursday, January 20, 2005 12:50 AM CST

Hi everyone. Thanks for visiting - it's nice to see how many people care and pray for Maxieboy. Please remember to sign the guest book often! I will print the guestbook one day for Max so he will always have it!

Now time for our update. Max is doing well, spent the last few day's home from school. Not sure if he is coming down with something or if something is going on with him. The ped ran a ton of blood test yesterday (basically to make grandma happy :)) and we probably won't know the results until Friday. We believe it may be his Concerta causing his problems so I think we will work on getting him off of it and find other ways to deal with his ADD. With alot of patience and a ton of love he'll be fine :)

He's due for his yearly MRI in February and I'll let you all know when we have that scheduled.

Thanks again for visiting!

Sunday, December 26, 2004 9:25 AM CST

Happy Holiday's! We had a great Christmas. The kids were so excited and happy - they were the perfect age this year! They spent the day playing with their new toys and just enjoying the day. Busy week ahead - will be heading to Toys R Us to spend their xmas money of course that will be first thing Monday! Max has a dentist appointment, twins have karate and we have playdates and a visit to Nana's house - busy busy busy. But best of all is New Years Eve which will be spent with Angie and Joey at their new home with their new little bundle - baby Joey! It should be the perfect ending to a very, very good year. Here is hoping that 2005 is as happy and healthy as 2004 was for us.

Wishing all of you a happy and Healthy New Year! Thank you all for your love and support!

Saturday, November 20, 2004 7:17 PM CST

Well it's hard to believe that tomorrow will be 2 yrs since Max was diagnosed with his brain tumor and Monday will be the 2 yr anniversary of his surgery. Sometimes it feels like it was forever ago and other times it's like yesterday. Thankfully Max is doing well and has had no major complications since the surgery.

Day's like these remind me how grateful I am to have my family and amazing friends to support us on day's like that and every day in between. Thanks to all of you for your love and prayers.

Saturday, November 6, 2004 7:57 AM CST

Hello All

Just thought I'd pop in and let everyone know what a great Cub Scout Pack Max has! Last nite was his Pack meeting and they do a Service Project every November and this year decided to do something for NF for Max. It was great, they made baskets for the Foundation to use for Raffles and Auctions at events. The kids did an awesome job and the baskets were great - they did a movie nite, baby basket, camping basket, dog/cat basket, outdoor games basket, school supplies basket and a waffle basket (very cool) - think that's all of them - sorry if I missed one :)

Michelle from the Foundation came and gave a great talk to the kids about NF and the research for it. The kids sat still and listened the whole time - never have we seen them so attentive (think it's cause Michelle is cute LOL) Max was also brave enough to get up and tell everyone he had NF and showed them his spots.

It was a great nite that made me so happy and I know the baskets will bring in great money for NF. So THANK YOU PACK 165!!!!!!!!!

Tuesday, October 26, 2004 9:24 AM CDT

Hi All

Max is doing well. He's very excited for Halloween - he's going to be a glow in the dark skeleton (that is if I manage to repaint the costume with glow in the dark paint before halloween). Noah is going to be Spiderman (surprise, surprise) and of course Anthony will be Bob the Builder.

Although Max's EEG was clear he's still not himself. I'm scheduling an appointment with another of his Neuro's for a second opinion. Dr. Kinder (his ped) and I don't really trust the EEG since Max was wide awake and moving quite a bit during it so it wasn't a good read. He has also ask to see the "nice man" a bunch of times since August so I'm finally making an appointment for him - the "nice man" is his psychologist. He has a kid in his class that is pretty mean to him - this same kids was in his 1st grade class and the reason Max saw Dr. Hentoff in the first place - so I"m hoping this will also help.

All and all we are doing well. I've decided to take a leave from the NF Foundation - soon to be known as the Children's Tumor Foundation. I want to thank everyone who offered there opinion, advice and support with this decision. I'm going to spend sometime getting to know another Foundation and just enjoying the kids - then I'll decide were my efforts can make the most difference.

Friday, October 8, 2004 7:17 AM CDT

Max had his EEG yesterday and it went well. He did a great job for such a scared little guy :). He was afraid the exam would be like you see in cartoons where the character gets electric shocks from wires in on their head. He was very happy to find out that it doesn't hurt at all. He's also excited that he gets to bring a picture of himself with all the wires on his head to school today and he got to keep all the red dots on his head to show his friends.

The tech was happy with the test and doesn't think it shows any signs of siezure activity. His left side does show low waves but that would make sense with his tumor being on that side. We will talk with the dr next week to see what the final results are and see where we go from here.

Wednesday, October 6, 2004 1:31 PM CDT

Well Max's appointment is tomorrow at 4pm. He's excited because he gets to stay up late tonight so he will be tired for the exam. School pics are tomorrow also so it should be interesting to see how his come out after being up all nite :)

Wish us luck and please send prayers.

Monday, September 27, 2004 7:37 AM CDT

Max saw his neurologist on Thursday, September 23rd. He has these odd episodes that last a few days were he starts to be unable to process anything or control himself even on his Concerta (he has ADD). Then he looks glassy eyed and drugged out for a day and the next day he's exhausted. Not sure what it is - hoping the EEG will give us some answers.

The EEG is scheduled for October 7th at 4pm.

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