Monday, December 13, 2010


As I reflect on this past year, I realize this has been one of the hardest years of my life. Once again, I had to accept... yet another, hard blow.

I have been through alot in my lifetime. I lost my brother, my only sibling, to a malignant brain tumor when he was only 32. At first I could not accept the fact that the type of cancer he had was terminal. I called Dr's all over the world, I researched the cancer he had till I could no longer see the computer screen for days, my eyes were too tired. I watched my healthy looking brother who did not complain once, become sicker and sicker by the day. I still thought I could do something to help cure him. I looked into alternative options, homeopathic medicine, herbal treatments, diets, the list goes on. He had brain surgery to get as much of the tumor out as possible. The Dr's at Mass General did a great job and my brother Quin lived three more years. The last six months of his life I watch him slowly become completely paralyzed. He lost his voice, then his movement, then he became stiff and unable to do anything but blink to communicate. He still had his sense of humor and found ways to tell me he loved me. I brought in my boyfriend at the time, who my brother was not too fond of and he sang a song (he could not sing), my brother looked at me and laughed his last laugh, like what is this guy doing, he is not right for you. He was right. My brother was my best friend and I miss him dearly.

I also lost my mother to lung cancer. She was diagnosed with stage 4 lung cancer a few weeks before I became engaged to be married. I had no idea, she waited a couple weeks to tell me so we could enjoy our engagement. I started to research again, knowing that this also was a tough cancer, but maybe I could find something to help. Acceptance was tough, I was devastated once again. Mom did not complain once during the treatments. She loved my husband and was thrilled about the wedding. She was too ill to help plan with the wedding, so I did all the planning with my husband. It turned out to be a beautiful wedding at an old estate, my mother, father and all had a wonderful time. She looked beautiful, we lost her 3 months later. I just wish she lived long enough to see her first grandchild. She is deeply missed by all.

Later that year I became pregnant. I had the best pregnancy and of course we were thrilled to become parents! I had the worse labor. The baby was 10.8 lbs and I had hard labor for 24 hours, there was no way I was able to push a ten pound baby out. The baby's heart became weak a couple times and the nurses were worried, I finally had an emergency c-section and Christopher Jr. was born. Perfect baby, I was told. At six months with no milestones emerging, he was the diagnosed with CP.

Acceptance was hard once again, some said there is no way he has CP, he will progress, just you wait. I knew better and again I did my research everyday. This time I found something promising, ABR (Advanced Biomechanical Rehabilitation). I read all about this therapy and it just made since to me! ABR is a hands-on therapy that addresses the smooth muscles/internal myofacia of the body. A therapy that brings predictable recovery of the musculoskeletal structure and motor function in children and young adults with brain injuries. I signed up right away, two weeks later we were in Montreal for training. We practiced this therapy everyday for 5 years and it is by far the best therapy we have done for our son. I saw his body transform right in front of my eyes.

Well this year was the big blow. Christopher started biting his bottom lip non stop and I was beside myself, my son was biting his bottom lip off. I talked to Children's Hospital and they gave us drugs to help him stop but it just got worse. Our PT saw a show called mysterious diagnosis, and sure enough they had a show called "The boy who bite himself". The boy had Lesch Nyhan, a syndrome-disease that is caused by the lack of the enzyme that controls uric acid in the body. It causes CP like symptoms, with self injurious behavior. I did some research the night she called and diagnosed my son that night with Lesch Nyhan. He fit the profile to a T. I called for testing the next day and he was diagnosed by Children's Hospital with Lesch Nyhan in early January 2010. Lesch Nyhan is usually inherited and the mother is usually the carrier. I was tested and I was not the carrier, it was a fluke in genetics. This diagnosis happened two weeks before our pending lawsuit was to be done with. We had to cancel the suit.

For some, acceptance was so hard with this diagnosis. Our SON has one of the rarest conditions in the world with a horrendous outcome. I was so sick for one week, and then I accepted this time. What I have been through in the past has helped me become a very strong willed person. My husband and many family members did not accept this diagnosis. Some still think he does not have Lesch Nyhan. It took all year for my husband and family to come to terms. The Dr's are hopeful with all the new medical breakthroughs and are hoping gene replacement therapy may be helpful down the road. Christopher-Cj is healthy and stable at the time.

I am just happy that this year is over and we can begin the new year with love, hope and good health. Once you learn to accept you can move on, otherwise you can not. Like my brother said when he found out about his cancer and all he went through, "a piece of cake".

Thursday, November 18, 2010

Photo Carnival

Ellen, over at Love That Max is hosting a favorite Photo
Carnival! I have so many favorite photos, but in this photo
I just love the expression on Cj's face the first time
he laid eyes on his baby brother!

Monday, November 1, 2010

...and now for Ryan!

He had to pee in this picture!

Ryan wanted to be a robot! He has been talking about being a robot for months. This summer he wanted me to make his costume so it would be ready in time for Halloween. I told him to make a robot out of Lego's and I will make one just like it. He did a great job and gave me some great ideas. It is an easy costume to make and he loved it so much he wanted to sleep in it!

Saturday, October 30, 2010

preview of cj's costume 2010 more to come....

I gave Cj many options to choose from for his costume. He picked a scarecrow! I whipped this one up and it was a HUGE hit at his school! There are more pic's to come! Ryan was in a parade at school and was the first one to march out with as much pride as the president of the USA! He was going too fast and the pic's were not that great! Will post more from Halloween Day when the costumes are complete!

Monday, October 11, 2010


Ryan...2 years old as Puppy!

Ryan at 1 year old as Clown!

Cj at 1 year as Nick Jr Reindeer!
Cj at 2 years as Puppy!

Loved these!


Fall is one of our favorite times of the year in New England! We went apple picking today and I am going to start the apple crisp, apple pie, apple sauce and more! Lots and lots of apples! Cj and Ryan loved feeding the animals at the farm!

Now since Halloween is approaching it is time for some new costumes. We have been pirates for too long. I am still thinking about this years....?

Tuesday, September 21, 2010

Guess who is talking?

Fall is here in New England and both boys are in school full time and loving it so far! Ryan does not love getting up at 6am but he is adjusting. Poor little guy has to get on his bus at 6:45am and has been a trooper. Cj has been waking up for school at 4am...ouch! This results in napping for an hour at school which is not good! But the last two days he has managed to sleep in until 5:30am! (Yay!)

When we woke up today Cj said HELLO (perfectly) I said HELLO back. He laughed. Then his brother Ryan came into the room and Cj laughed again and said RYYYYY! Ryan laughed and could not believe his ears! He just kept saying did you hear that Mommy! Then I said I love you and Cj said IIIIIIIIIII WUV YOU back! I would of kept on going all day but we had to get up and get ready for school. Hopefully this will continue!
I don't know folks but maybe just maybe this is a new beginning for a speech breakthrough...some real words! I have been hearing him say Ma loudly the last couple weeks when he needs something. He has said drink, wawa (water) more, wuv ya and ya (yes) in the past but nothing like this. He also has been trying to verbalize his choices lately too. Maybe his new speech therapist has a trick up her sleeve or maybe his brain is waking up? I am going to contact his speech therapist and see what she has to say about this new development!

All I can say is that we are thrilled!

Tuesday, September 7, 2010


Having a SN kiddo is tough work to say the least. Rewarding but tough! All the therapies, early intervention, ABR 2-4 hours plus a day for 5 years, doctors appointments, IEP's, feeding, bathing, changing diapers, dressing, equipment clinics and the list goes on and on and on. Plus having a very social, bright and active 5 year old is more work! I know kids are lots of work SN or not. But all you SN Moms know what I mean. We are warriors! I never thought this day would come.
It is Ryan's first day of kindergarten and the bus came at 6:30 I was told 7:30! Alarm was set for 6:40. Oh well my husband drove him his first day which I wanted anyway. My husband ask what are you going to do today? I said NOTHING absolutely NOTHING! I did not even cry! (Should I feel guilty?) Freedom! Time to read, workout and start my portrait business! I will miss the little guys but it is time for me time!
P.S. Cj is doing much better...notice the two top teeth! Gone! It helped having them pulled and a new mouth guard!

Thursday, August 26, 2010


Cj has been doing so well with his new mouth guards (two different sets) in school and at home. I did not think we would be going down this road again so soon. Let alone before school starts with a new teacher next week!
I am so worried about him! Last Wednesday I noticed he was really working his mouth with his tongue and his loose top tooth! I know this is normal for kids. Thursday he was not watching TV or playing just trying to get to his tooth and trying to bite his lip. I called our wonderful dentist and he told us to come in the next day (Friday at 8:00 am) and he would pull his top two baby teeth.
Well Thursday night at 3 am I woke up to a bloody mess. He figured out how to bite his lip over the guard (the Lesch Nyhan kicked in). His lip is a mess! My husband suggested to put in the first guard the dentist made and it worked...but only for a few days. He had his teeth pulled Friday am and he did a great job tolerating the whole procedure. The old guard was still working. On Sunday night he went wild trying and succeeding in biting the lower lip with the old guard the dentist made. I had to put the first mouth guard that I made him back on Sunday night. I took one of the newest guards and put some masking tape on the front of it to bump the bottom lip out and it worked for about 3 hours until it got too soggy and fell out. I called the dentist and they are going to try a new guard to bump the lip out.
We were going to go to the Cape for a few days of rest before school starts but had to cancel. He is just too uncomfortable.

Please pray we will get the new guard and it will WORK before next Wednesday when he starts kindergarten!

Monday, August 16, 2010


Could not help but post this! I was cooking dinner and walk in on them!

Cj Graduated Preschool :)

We are so proud of him and he was so proud of himself! He will start a kindergarten program focusing on communication. I have been testing him daily and his reading skills are really developing. I will write three words and he is picking the correct word! You can not imagine how happy I am about this. At school on the computer voice output he is picking books over toys! He is so proud of himself it is too cute! I will have to get this on video!

Thursday, August 5, 2010

The little blue chair...

Christopher had a little blue feeding and activity chair I bought at Babies R Us when he was only 9 months old. Little did I know that he would be using this chair up until the age of 6! Not only was this his activity and feeding chair it was his hanging out with his brother chair, TV chair, beach chair, grooming chair, coloring and learning chair, ABR therapy chair...the list goes on! He went through 5 little blue chairs.

Today I finally threw out his last little blue chair! It was so worn and broken. I had a little cry bringing this little piece of equipment out to the trash that only cost us $29.99. This was the most useful piece of equipment we have used so far!

I went into the living room and looked at his new $800.00 tomato chair. Great looking but he does not even like this chair! It got me thinking once again. What is wrong with the equipment system? The prices for everything our special kids need is sky rocket!! The insurance companies get away with so much! They target special needs parents and the medical supply companies. We are stuck in such a tough position that is just not fair. I am fighting for four very expensive pieces of necessary equipment at the time. Equipment that will help him have a much better life and I know it will take forever to get. Why can't we just go to Special Needs R Us?

God I will miss that little blue chair!

Monday, July 5, 2010

Hope Everyone Had a Happy 4th of July!

We had a great day! We went to a parade at Nana's house. It is such a quaint little neighborhood parade that goes right in front of her house with the kids dressing up their bikes and riding them down the street with a small marching band, fire trucks , police and a lawn chair march which was hilarious! Then I had family over for a BBQ. Nana babysat and my husband and I went fishing! Yes fishing! He bought some bait and it was a total surprise! I love to fish and did well at it when I was younger down the Cape! We got a couple hits but no fish. However I had to fish for two cd's that fell off the jetty deep into the rocks. I was successful with Cj's favorite Backyardigan's CD (thank god!) but my husbands music CD by Morphine was lost...oh well! We ended the night with the Salem fireworks at the beach! I am tired today...time for a nap!

Wednesday, June 16, 2010

We Ordered Cj's New Wheels!

We got the....New Quickie Zippie Iris in Blue Opal to match his eyes! I like how it is light weight and love the way it handles. Most of all I liked the way Cj looked in it and he made a little smile when he sat in the chair! He told me which chair he liked!

So the nightmare is over! I will post pictures when we get it. It can take up to four months.

Next is the bed issue. I was going to get the $6000.00 Sleep Safe bed. Thank goodness I did not because of his new diagnosis it would not of worked. But any kiddos with Cp it is one of the best! I know alot of kids using them.

Friday, June 11, 2010

Video you have to see: That Annoying Kid

Video you have to see: That Annoying Kid

This is a great video of a boy with autism and an amazing young group of kids! It really is a must see. More children and people with special needs have to be exposed in public so our kids will be more accepted in the world! The schools are helping but it is not enough!

Thursday, June 10, 2010

The Graduate!

Yes Ryan Graduated from Preschool today!

It was bitter sweet. Of course I cried! He was a little nervous but did a great job! He is going to miss his classmates and teachers but is really looking forward to Kindergarten and making new friends. Now it is time for summer camp! My baby grew up so fast!
He is now a big boy!

Christopher has a graduation at the end of the summer as well!

Monday, June 7, 2010

Fun, Gardening and the IPAD?

We have had the wackiest weather lately! Tornado warnings, thunderstorms, hale warnings, sun one moment rain the next. Really scary!

However Memorial Day weekend was fabulous! Great weather, lots of BB Q's, pools and beach with friends and family! This a picture of Ryan. My engineer in waiting making a floatation device for our neighbors dog! He is something!

The storms began after the long weekend and have finally stopped! I love to garden and am fortunate that a little old lady lived in our home years ago and the soil is rich and many of her flowers are still in bloom. I have added many flowers to the garden from an old estate nearby. They grow clippings and the flowers are amazing. I will post some as they bloom! So I am finally back in the garden! I picked some roses and peonies before the last storm and they are amazing! They get ruined after heavy rain so I was glad to save some!

I am also thinking of getting the IPAD for Cj! I have seen so many special needs kids doing very well with them. Some of my friends say to wait for the new model coming out soon. What do you think? I am going to show his school some video clips of some great progress with some of my blogger friends kids!

Maybe they will get one for the school after seeing them.

On another note Cj will be test driving the Quickie Iris next Wednesday. I will keep you posted!

Wednesday, May 26, 2010

my wheelchair nightmare goes on :(

I have decided to use Christopher's nickname Cj on my post.
The moment they put Cj in the chair he hyper extended and was miserable! He looked at me with a pout and told me with his eyes this is not the one! He started bawling his eyes out! I could not even take a picture he was so sad!

The chair was light weight but it moved too much for my liking. All the parts rattled...? He moved too much in the chair and was not positioned well! I really needed to try this chair because so many Moms have told me they have liked it for many reasons.

I think Cj would of broken this chair in one week with his strength. It had alot of PLASTIC components on it!

I thanked the rep for all his hard work. He could tell he was a little irritated. I felt horrible because I made such a stink to get this chair to trial! I told Tracey his pt that I was going to go up and down the hallways once again to look at the other children's chairs. Quickies, quickies everywhere!

Bob my other rep just happened to come around the corner and we have decided to try the Quickie Iris in June.

I am kind of a perfectionist and I want the best for my kiddos!

Am I being too picky or maybe deep down I just do not want a wheelchair even though I know he needs one.

Monday, May 24, 2010


Christopher decided on a pirate theme last minute! We had a crowd of 35 friends and family! He and all the kids had a blast!

We had a barbecue and lots of cake and ice cream!

Christopher was very spoiled and it was well deserved with everything he is going through!

He enjoyed the cake as you can see!

Lots of cute little girls and boys!

I can not believe he is seven!

This is his original crown from better than normal!

I have 3 boys (including hubby) so figured if they are good for a day they can wear the king for the day crown and get a surprise or on their B-Day!

I made the pirate logo and put it on the reversed side to go with the party! They are great gifts!

Thursday, May 20, 2010

The Chair!

I thought this chair would be here earlier!

Next Wednesday it will be here!

Of course I had to order some extras they forgot to make it work.

They may want to hire me to be a rep!

Cross your fingers.... it will work!

and a prayer!

PLEASE!!!... :0)

Monday, May 17, 2010

A Day At the Beach.....Finally!

We have been to the beach a few times this year but the weather has been sooo lousy lately we have been waiting for a day like today. I found this amazing piece or drift wood! Very small but it had beautiful colors!

Ryan and I had fun at the our favorite little beach. He made a great crab habitat! We had the whole beach to ourselves for a couple hours. Picture perfect day with my little guy!

Thursday, May 13, 2010

A New Form Of Communication!

As many of you know I am training Christopher to use an eye gaze communication device. I have the Tobii C12 or Dynavox in mind. They may have some different ideas. I will try them all!

We are going to Children's Hospital to their communication center. They have all the newest equipment and they will work with us to see if he qualifies for one of them. Just to let you know I was told Easter seals is a great source for communication needs! There are many other organizations for funding as well. I will post a list soon as I have a great connection!

Well I am pleased to announce he can shut his eyes now for a couple of seconds to say YES! I have only worked with him for a few days and HE GOT IT! We also use our hands to make choices. I make him stare at the proper choice twice and he must stare for at least a couple seconds to get what he wants. I will say apple for right hand and banana for left. He has perfected this when making food choices. I will test him sometimes to make sure he is making the appropriate choice. They are also training him at school with pictures and multiple choices.

Still waiting for the chair to arrive!!! I will keep you posted!

Thursday, May 6, 2010

The Real Deal

I understand the concept and self confidence our children can benefit from using a manual chair. My son has dystonic movements and splints on his arms that make it almost impossible for him to self propel.

I am going to suggest at Christopher's school to try the standard wheelchair to see what happens down the road. He is not ready yet. They are fantastic and will try anything we suggest!

I am so lucky to have such a great support team! They all love Chris and will do anything to make him happy and be as independent as he can be!

Wednesday, May 5, 2010

I would not take no for an answer.......

I have wanted to demo the Thevo Twist chair the first time I saw it.

After having called Exomotion in Seattle WA at least 5 times over two years and begging local medical supply companies to get this chair for me to demo I gave up. It is not Exomotion! They were great! It is of course the money factor between the insurance companies and the supply companies.

We have tried over six other chairs and they just were not right. Too heavy, robotic looking or just plain old ugly and uncomfortable for my son. So frustrating.

Well...a friend from ABR told me she received this chair a couple months ago and LOVES it! Another contact from Germany told me she knows of families with children with LND that are VERY happy with this chair.

So I told myself I am going to make this work. Having been in sales for many years I have no problems talking to anyone, including the president of ANY company!

I called a major medical supply company in MA that is all over the states and told them I have a contact number and a name at the their corporate office. I told them I will call them myself. They told me they have never heard of the chair or the company. The chair is only two years old and is very popular out in the western sates and in Europe.

Well guess what! I got a call back two hours later from a rep who contacted Exomotion and I have a demo coming next Tuesday to his school!

I am so excited because now other children with LND, CP and many other conditions may benefit from this chair in the New England area. It has a new dynamic back like no other chair. It calms the child with sensory input. It weighs only 42lbs, comes with lots of options and has a high low base for home and school.

.......So it looks like a stroller. He is seven and I do not want him to feel like he is a toddler so this was a big issue with me. Christopher can not propel himself period. This does not bother me anymore. Some people even suggested we get a chair with the big wheels to make him look more independent. A regular wheelchair.

Most do not have the options he needs. He is who he is. My happy blued eyed Christopher who brightens every waking day of many peoples lives.

I think it is a cool looking chair and I hope this demo is a done deal!!!

I just wish things were easier for the kids and parents who need it most.

Saturday, April 24, 2010

Back to square one.....

The wheelchair rep came by and the X-Panda will not work for us. I am so frustrated I can't stand it. My first pick the Thevo Twist chair I want I can not find a rep to get it! The second chair the Kids Rock does not come in his size. Now this chair the X-Panda is sooo heavy I can barely push it up our ramp and he sits too high. Now what....??? I have two great reps helping me. However their companies do not work with Exomotion who makes the Thevo Twist. I am going to call Children's Hospital Monday and see if they can help me get the Thevo Twist to demo.

Wednesday, April 21, 2010

Anniversary flowers..........

Some flowers my hubby brought home for our anniversary...a little spring for the kitchen!

Monday, April 19, 2010

The Grandchildren....

Missing from the picture are David, Rachel and Ben Dennesen. That is Auntie JoJo hiding behind Christopher if you are wondering who's arm that is.

Sunday, April 18, 2010


Happy 80th Birthday Mom! What a great turn out! She was so Happy to see all her Family and Friends! (we missed the Ireland Clan as well as David and Jess)! Auntie JoJo, Uncle Jo, Auntie Cindy, Uncle John, Gregory and Kristen did a fantastic job decorating! Auntie JoJo worked hard to organize the party and Everyone did a great job helping with food and fun!
Nana and her sister when she walked in! More pictures to come....