Christopher's New Journey

A DREAM COME TRUE!

2011-11-04T09:36:00.018-04:00

I made the appointment at Children's Augumentative Communication Program. Chris and I had Cj's speech therapist and physical therapist meet us at the hospital. I was so excited about this day, I could not contain myself. I have had many conversations with my son about this day and he was just as excited. I told him, I know you're going to prove to the world someday just how smart you are. Someday you will be able to speak your mind, just you wait! He always giggles and beams when I say "Who knows, maybe you will be the president of the USA someday."

We all walked into the very small evaluation room. There were two specialist's whom took to Cj right away. They spoke with his speech therapist first and she said he had a short trial on the Dynavox and he had some difficulty navigating the screen. She decided to continue using communication boards and books for more practice. I stepped in and told them I have been using many methods of communication since he was 6 months. When I realized he could not speak (he has very few words) I used eye gaze boards that I made when he turned one. I spent every day training him to look at objects, to make choices and to point to objects which he mastered. I did many hours of research and emailed many parents with non-verbal children with many different diagnosis' and asked them which communication device, if any worked for their child. I told the specialist that the Tobii C1 had the best results with children that have similar issues as CJ. Some children with Lesch Nyhan can speak, however many can't.

The specialist then tested Cj's eye gaze using boards, watched him watch a video of Dora and decided to test test him on the Tobii C1. Both therapist's and my husband were a bit nervous, I was not. I had a gut feeling this was it. They brought in the Tobii and hooked him up with the screen in the right position and he picked it right up. They asked him where Dora the explorer was and put her in many different positions over the screen and he nailed it each time. When he looks at the screen a red dot comes up and goes over to his choice and speaks for him, "Dora". Then they had a screen come up with four choices, play with toys, watch a video, do nothing and all done. He picked play with toys and then a drum, bubbles, a ball and a book came up on the screen. He went right to bubbles, he LOVES bubbles! The computer said,"I want to play with bubbles" he beamed and looked at everyone in the room and laughed. There was not a dry eye in the room. I said I told you so! His ST and PT could not believe how well he did, especially with seven people staring at him. Cj had a few more tests and nailed them all, picking all his favorites with ease. They even tried to switch things up, he proved them wrong. We are going to rent the device for a few months through insurance, then if all goes as well as expected insurance will pay for one.

So watch out world! Cj has 8 1/2 of years of telling us what he has thought of, what he thinks about and most of all, what he wants. I hope it is all good..lol! Ryan said the other day, "Mom, I can't wait to talk with Christopher!"

A Whirlwind Summer!

2011-10-13T17:50:00.033-04:00

Our summer plans for the most part did not pan out at all. My husband had to end his business due to China. He has had a very successful plastics manufacturing business for 25 years. It took him all summer working every day to shut it down. This week it will be a reality. We really had to buckle down with expenses so family vacations were not going to happen this summer.

I made sure we still had lots of fun! Ryan went to a summer day camp at the beach for 6 weeks and made lots of new friends. Cj went to summer school for six weeks and in between we lived at the beach or friends pools. Thankfully the beach is basically one block from us and we have three beautiful beaches to pick from that are in walking distance. We also had lots of fun in the new van...but my god it cost a fortune for gas in these huge conversion vans!!!

While the boys were in school and camp I helped a friend open a new gift shop downtown! I helped design and decorate the shop, which is right up my alley. I am now working on my artwork to sell and I am also working at the store now 3 days a week. I love it!

Cj has had a tough summer with this new diagnosis. His behavior was off the charts, trying to hurt himself more and others at school. We brought him into Children's Hospital and they put him on a anti-anxiety medication that has made a world of difference! He is calmer and more alert, just in time for our eye gaze trial at Children's Communications lab next week. I can't wait, as I am keeping my fingers crossed that we find something that will work. I know we will, he has been practicing for 3 years and he is ready. When I told him where we were going and what for he beamed and laughed so hard I cried!

Both Ryan and Cj have grown like weeds over the summer! Ryan loves first grade and is doing fantastic academically. He is great with numbers, must take after my Dad. Cj loves school too, he is just frustrated because of his lack of words. Watch out everyone, just you wait and see!

I will keep you all posted on his trial and what we come up with! My husband has some great connections and is looking into many great offers. I know he will find the right fit! I am looking forward to many new beginnings.

Cj's 8 years old!

2011-06-03T14:33:00.008-04:00

I can not believe Cj is eight years old and Ryan is six. He had the best time at his Birthday party, the best party yet! He is getting to be such a socialite compared to many years of crying and just wanting the party over. He does not want any party to stop now! As you can see, Ryan now insist on wearing a suit jacket and dress shirt to all Birthday parties. Too funny, he takes after his Papa!

Life really does go by quickly, so this summer I plan on having lots of fun! We have the van now so life really is easier. Both boys are out of school in a couple weeks. Ryan has camp in early July and August and is going to give soccer camp a shot! Cj has only 4 weeks off from school so I am planning some trips. I am planning a three day camping trip in Maine or New Hampshire. My husband hates to rough it, but I want the kids to try sleeping in a tent, looking at the stars, cooking marshmallow's, fishing and then hopefully eating some fresh fish on the grill. I will try to find a camp ground with a shower and toilet for hubby. However, I still think we will end up in a hotel! We also plan to spend a couple weekends in Maine with my sister in law and most definitely a couple trips to Cape Cod.

One of my favorite places on earth is Chatham, down the Cape, where I spent most of my summers growing up. We have friends to visit and many place to go where I reflect on some of the best memories of my life. We also plan on fishing, shopping, lots of beach time and eating at some great places. Someday I hope to buy a small place in or near Chatham. It's a dream, but you can dream and sometimes they do come true!

IEP DREAM!

2011-04-27T15:09:00.047-04:00

I must tell you, I am still overwhelmed with happiness about Cj's IEP meeting! I wish my husband was there. Chris was at work, as I usually do all the talking! This is the meeting I have been waiting and dreaming about for four years. At first I was saddened that his classroom was so small, only five children. Many seem to have little cognitive ability. His teacher and ST are very young, but extremely bright and are on top of all the new learning skills and teaching methods (just what he needs), his OT is wonderful and has worked with Cj when he first went to this school, his PT is brilliant and has worked with Children's!

We started the meeting talking about how well Cj is doing health wise and how we are practicing eye gaze exercises and how he is doing great on the ipad. I told them my main goal this year forward is COMMUNICATION, period! He is going to be 8 years old next month, he is in second grade and it is about time we work on some devices! Both my husband and I have always been the biggest believer's in Cj's intelligence since the get, and I have been pushing the communication issues for a few years! The ST told me that they just did a small trial with Cj, there was some extra time left with a specialist that was at the school trialing a Head Mouse on another student. They put a small sticker like circle on Cj's forehead and a camera on the computer that picks up any movement from the sticker and it is shown on the screen. The ST told me he picked it up right away and was swirling the cursor around the screen and smiled, it was like he thought the computer was reading his mind! I was amazed, I had no idea he had this trial! I think she was waiting for the IEP to tell me. She said that because his head control is pretty good that this method of communication should work with a lot of practice, I have to see this to believe it. They are going to schedule a trail at the school so I can witness this miracle!

The ST thinks that the Head Mouse may be the way to go since when using an eye gaze device the head has to be very still, and Cj hates the wrap they have to put on him to keep him still. He loves to move because of his dystonia, so it kind of makes since to me. I am still going to the Children's Hospital communication lab with the ST to trial every device, eye gaze and the Head Mouse.

This year I have a great feeling this team is going to do wonders for my son, as they all BELIEVE in him and know how smart he is. They are pushing him to learn as he tends to want to play. He is now working with two switches, YES/NO consistently and appropriately. A little boy came over and stole his lunch one day and Cj pressed NO three times, the boy brought his lunch back and he pressed YES. There were many stories like this that blew me away! Past IEP's were not that bad, I've been lucky and have loved all his teachers. I just think it's Cj's time to prove to the world what he can do, and I think his team does too! Each person had so many wonderful things to say about Cj, I thanked everyone and walked away on cloud nine! Finally they all believe in Cj and he is just exploding with confidence and proof that he is smart, we were all on the same page.

PS. I threw in a few photos of Cj's new wheels! He can now see the world a little better and we do not have to break our backs.

IPAD FUN!

2011-03-25T13:42:00.028-04:00

Cj LOVES the iPad, and so does Ryan! At first Ryan would sit for an hour or so and help Cj play, but Cj gets it now and loves to play by himself. He has his apps, Ryan has his. I found a great elbow support I am going to order from Rifton for his right arm, but I am still looking for the right stand for his tray. I also purchased the Otter Defender Case, very durable, a must!

Cj is bowling really well now. It's so great to see him finally interacting, and really enjoying himself on his own! They still play together, but Ryan has become a pro at games I can't even figure out. He wants to learn chess, and yes, he said he is going to be a computer nerd and wants to go to MIT summer camp. My Dad has a friend who sends his grandchild, they both go into MIT just to watch the kids. Ryan (6) asked my father if he could go, at $8000.00, I don't think so.

Instead, I signed him up for soccer and T-ball just to see if some sports will work for him (he is so active), he will also go to a summer camp a few blocks away with some friends for a couple weeks during the day. I told my Dad, if he really wants to go to MIT camp he will need to get a job, and do a little fundraising. He is still too young, thank you!

Here are some of Cj's favorite iPad apps: Yes/No, Action Bowling, Talking Tom, Goodie Words, Peekaboo, Baby Shapes, Tap to Talk, Bubble Free, Doodle Buddy, Fireworks Lite, Kids Piano Lite, Pocket Pond, Fluid, 123 Kids, Word Family, Talking Roby, Magic Piano. Buddy#1, My First Words, Baby Writer, Actions, Motion Book, Sound Touch Lite, Talking Gina, and Colorful Aquarium, just name a few, and most of these apps are FREE!

P.S. Ryan is finally over the stomach virus after 7 days, Cj is still sick, Mom and Dad are alright so far (besides being exhausted), knock on wood!

Dennesen Hospital

2011-03-19T15:18:00.005-04:00

Hello,

This is nurse Lisa, I have been on call now since 1am Friday with Ryan. He has one heck of a tummy virus, one like I have never seen before. Both my kids have been so darn healthy, I am not used to this (knock on wood). Poor Ryan has not had a bite to eat since, only liquids. I have been using so much Clorox and Lysol all around the house I thought Cj would be OK...wrong. I think we are all doomed. I heard oil of oregano can help, so I have hubby going to the local health food store.

I had a dinner party planned for Sunday...I don't think so! Have you tried oil of oregano, and does it work? I hope so!

RYAN IS READING!

2011-03-07T14:53:00.005-05:00

Ryan is in kindergarten and was having some difficulties with some of his reading skills, like most kindergartner's. We worked on them for a while, and all of a sudden, he took off!

I was cleaning around the house when I heard him reading away in the sun room! He had a stack of books and was reading each book, front to back! I was so proud of him, figuring out each word. It took him some time, but he was READING, and so well! Now he wants to read a few books every day when he gets home from school...we will see how long this last.

One proud Mama here!

Cj's new wheels, at last!

2011-02-26T10:06:00.000-05:00

Here is Cj in his new wheel chair!

He's watching his brother on the ipad,

wanting a turn!

Ryan needed some attention too!

Told ya, class clown!

As you can tell he loves his new wheels!

The color matches his eyes.

Eye Gaze Device!

2011-02-25T15:20:00.000-05:00

I have not posted for quite awhile, as I have been too busy! So here is an update.

Cj has a fabulous new Speech Therapist this year, Sarah! She has been working very hard training him for the Dynavox. He is doing really well, recognizing the symbols and communicating his feelings, food choices, toy choices and choosing computer or book time! I have been pushing the school for a few years to REALLY start training him, and I found a gem! He told her a few weeks ago he was uncomfortable, staring at the uncomfortable symbol for at least 3 seconds, she then took him out of his old wooden chair and put him on the floor and he smiled! She saw a red mark on his back (not too bad, but still!) and fixed the padding! She was ecstatic that he was able to tell her he was uncomfortable through the eye gaze book she is using. She called me, and of course I was thrilled! So, needless to say they are going to get a Dynavox to trial! Cross your fingers, I think he is sooo ready!

As most of you know Cj has his new wheel chair and is loving it! I still do not know if I like his headrest, not enough support for the bus. We are working on it, everything is trail and error! We had a little problem at home a couple days ago, when I backed up the chair a few parts and bolts fell off! I had a rep come out today to fix and tighten all bolts...this should not of happened on a $8,500 wheel chair! Thank goodness he was home on vacation and not on the bus!

The conversion van will be here in two weeks, just in time for spring (please NO MORE SNOW...lol)! I am so excited, freedom, museums, beaches, parks, visits with friends and maybe a trip to Canada (if business picks up)! We will see...

Ryan is doing fabulous in kindergarten, he is reading now and was the second to make the 100 club (count to 100)! He is all boy and such a character, the class clown, I am afraid to say! He likes to be the leader too! He had a a little problem at first, wanting a lot of attention. I believe it may be due to not being able to play like he wants to with his brother and all of a sudden he has 20 kids to play with everyday! We worked on it, and he is doing great now. I love the way he treats other children. He can relate to so many different personalities and is very sensitive to a shy persons needs or a special needs child. He will start T- ball or soccer in the spring! We are so proud of both boys!

I will post some photos of Cj and his new van as soon as we get it!

iPad

2011-01-06T15:08:00.001-05:00

The iPad, by far, has been the best piece of equipment we have ever purchased! It is well worth the money. Cj has never been so engaged in anything that is so interactive. He is doing great at pointing to make choices, playing games, drawing, even using it ALREADY to communicate with an app called Tap To Talk! I am in shock at what he knows and can not wait to bring it to school to SHOW them! I use it with him every day when he gets home from school. He just beams when he I take it out.

I am going to make a list of our favorite apps and accessories soon and post them. I am looking into some accessories from a company called RJ Cooper, they have great ideas. I like their iPad mount, bumper case and ipad switch interface (can only be used with switch interface apps, not many yet!)

Also Cj's wheels are finally in, however it needs many adjustments...of course! The tray it came with will be perfect for the iPad. I really think the iPad will help him down the road with the Dynavox or an eye gaze device! I highly recommend it to any special needs child or adult that can point to some degree. FYI...Rj Cooper has a head pointer for those that can not use their hands! I will post a picture of Cj using the iPad in his new chair!

More good news! We are getting new wheels too...a new minivan! I am looking at the 2010 Chrysler Town and Country and the 2010 Honda Odyssey with a side entry power ramp. I am so new to this and can use any input. I got some great advice on the Yahoo Cp group!

Pictures and video coming soon!

Acceptance

2010-12-13T09:02:00.000-05:00

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".

Photo Carnival

2010-11-18T07:45:00.000-05:00

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!

http://lovethatmax.blogspot.com/

...and now for Ryan!

2010-11-01T08:44:00.000-04:00

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!

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

2010-10-30T12:34:00.000-04:00

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!

PAST HALLOWEEN FAVORITES!

2010-10-11T14:54:00.000-04:00

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, FUN & HALLOWEEN oooh my!

2010-10-11T13:37:00.000-04:00

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....?

Guess who is talking?

2010-09-21T10:57:00.000-04:00

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!

BOTH BOYS ARE IN SCHOOL FULL TIME!

2010-09-07T09:33:00.000-04:00

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.
BOTH BOYS ARE IN SCHOOL FULL TIME!
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!

HERE WE GO AGAIN :(

2010-08-26T13:14:00.000-04:00

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!

BROTHERLY LOVE....

2010-08-16T17:16:00.000-04:00

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

Cj Graduated Preschool :)

2010-08-16T13:59:00.000-04:00

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!

The little blue chair...

2010-08-05T11:55:00.000-04:00

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!

Hope Everyone Had a Happy 4th of July!

2010-07-05T10:32:00.000-04:00

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!

We Ordered Cj's New Wheels!

2010-06-16T15:31:00.000-04:00

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.

Video you have to see: That Annoying Kid

2010-06-11T15:26:00.000-04:00

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!

The Graduate!

2010-06-10T14:34:00.000-04:00

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!

Fun, Gardening and the IPAD?

2010-06-07T14:44:00.000-04:00

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

FUN:
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!

GARDENING:
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!

IPAD:
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!

my wheelchair nightmare goes on :(

2010-05-26T14:08:00.000-04:00

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.

7th BIRTHDAY PARTY!

2010-05-24T16:09:00.001-04:00

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!

The Chair!

2010-05-20T18:06:00.000-04:00

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)

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

2010-05-17T13:24:00.000-04:00

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!

A New Form Of Communication!

2010-05-13T14:15:00.000-04:00

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!

The Real Deal

2010-05-06T18:23:00.000-04:00

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!

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

2010-05-05T14:18:00.000-04:00

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.
http://exomotion.com/

Back to square one.....

2010-04-24T11:02:00.000-04:00

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.

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

2010-04-21T15:37:00.000-04:00

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

The Grandchildren....

2010-04-19T10:59:00.000-04:00

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.

NANA'S 80th BIRTHDAY!

2010-04-18T17:51:00.000-04:00

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....

A School Day with Christopher and his new Diagnosis...

2010-04-15T14:54:00.000-04:00

We are having a hard time with this new diagnosis!

Lately we have to wake up at 4:30am-5:00am when he does or he will kick his mouth guard out with his splints if we do not bring him down stairs to be fed. We try putting the TV on to entertain him so we can sleep a little more...but this is not working. (P.S. I also have to sleep with my legs over him so he does not injure himself at night). We are looking into a positioning system for his OWN bed!

My husband brings him down stairs (I can not carry him anymore) and gives him some meds while I make the beds and iron school clothes...I know I am picky! By then Ryan comes down and my husband feeds them breakfast which is great! Then comes the warrior....me. First I have to take his mouth guard out which is put in with Fixadent (cement!.... really!). I use a metal dental pick, tooth brush, denture brush and a hot and dry wash cloth to clean his mouth out. I feel like a dentist every morning! Then comes the wrestling match to change, bath and dress him with with the splints on. I have my husband help hold him down to do this and reposition the splints before dressing him. Otherwise I get kicked. He moves constantly when on the mat for changing because of his Dystonia. I then make his lunch. Once he gets in his chair for the bus he takes one more med and is his happy self again for the rest of the day. I am ready for bed..lol.

He goes to school and is doing great on the computer, unit time, therapy and interacting with his classmates. He gets home at 2:00pm and he watches a some TV or book. Then most days it is computer time for 1 hour. Then some play time with Ryan.

We are taking a small break from ABR therapy to concentrate on communication. With communication practice at home he is making choices by just looking at my hands. I will say right hand is yes and left hand is no or right hand is apple and left is orange etc. I make him look and touch his choice twice. I am going to go back to using my own photos of food, books etc so he has to choose between three items. I used on line pictures and symbols but they confused him. Sometimes the pictures do not even look like what they are suppose to. It is imperative eye gaze and touch pad training for all the new communication devices coming out. Which is exciting.

His brother plays well with Christopher which is great! He is also a big help! We eat dinner then Daddy plays with the boys until bed while I clean up and have a little chill time. More meds for Christopher then it is bed time.

It is the mornings I dread right now.....but then I look into those blue eyes and melt. It is worth it all. We love you our little buddy!

New Ocean View!

2010-04-10T11:26:00.000-04:00

Thanks to Dr. Silva (the kids pediatrician) cutting down some old trees we can see the ocean a little better now. We are across the street around the corner. The view is from back of our house,deck and sun room. The sun is out but it is only in the 50's today. Two days ago it was almost 90 out. New England weather has been crazy!!! Can't wait for spring to stay!!!

A Quiet but Fun Easter!

2010-04-09T10:08:00.000-04:00

We had my Dad who is not feeling too well over for Easter dinner and had a nice day! We missed our family gathering in Maine at Auntie JoJo's house! We will be up to Maine soon for a visit!

The boy's really enjoyed the Easter Bunny this year...I do not know how they ate all that candy and food and did not puke!!! Thank God!

Christopher is doing well with the mouth guard and splints. I just wish we could get rid of the splints so he can play more. The second I take them off he wants to knock his mouth guard out and bite his lip...soooo frustrating!!! We are praying that a new drug study going on now will be promising for the self injurous behavior!

Wheelchair Clinic

2010-03-25T11:10:00.000-04:00

Christopher had a wheelchair clinic on Wednesday! We think we are going to get the X-Panda by Snugseat with the multi position frame. It is so confusing because there are sooo many options for accessories. But he seemed really comfortable in the chair and it is pretty good looking to boot.
I think we will go for the Blue seat with Silver frame or Black seat with Blue frame or Red frame. Everyone who helped, his PT, OT and the two reps made the X-Panda an easy choice! We have looked at quite a few and I like all the options available with this chair.

Sorry about the lousy picture! You can view at http://www.snugseat.com/.

Ryan's First Real Art Gallery Show!

2010-03-20T13:25:00.000-04:00

I was so impressed by all of the awesome art work that Ryan and all of his classmates accomplished! They had an incredible turn out with alot of great food! Ryan was so proud!

Here is a painting called Leaves and some brownies he decorated!

Jonathan Burke Foundation Fund

2010-03-18T14:39:00.000-04:00

Thanks to ABR and the Jonathan Burke Foundation we were accepted for a $2000.00 fund to help pay for ABR! Thank you Lula and Annie! We feel honored and hope to raise more soon so we can continue ABR.

We also need to start looking into a new handicap accessible vehicle with a ramp for Christopher. He is just getting too big for us to get him in and out of our current vehicles!

We have some great friends helping us organize a couple of fund raisers! We will keep you posted!

I have to run. I have two monkey's on my back.....Ryan and Cj. It is too nice out too be in. Out we go....

P.S. (I posted the foundation blog)

St Patrick's Day

2010-03-17T11:29:00.001-04:00

Happy
St Patrick's Day
to All!!!

Renal Tests.... Dr. was very pleased!!!

2010-03-16T18:05:00.000-04:00

Yeyyyyy!!! Christopher's uric acid levels were 3 after the drug Allopurinol!!! (just right according to the Dr. ....they were high 8.9). His blood work was perfect and he has no kidney stones!!! We are very happy with the results!!!

Also happy with the Sun, Sun ,Sun!!! We now need warmth!!!

New Doctor's at Children's Hospital Boston

2010-02-20T09:52:00.000-05:00

Christopher has a new team of Doctor's.

Dr. Irina Anselm an expert in Child Neurology and Mitochondrial Diseases and Dr.G. Berry an expert in inborn errors of Metabolism and Endocrinology. He is now the director of the Metabolism Program at Children's. They work as a team in a new clinic they just started.

Dr. Berry believes gene replacement therapy would be the best treatment for Christopher down the road. They have many laboratories working on how to transport the gene into the correct area of the brain. They also have to find the exact area to target which is the mystery. He believes it my take five years or more. In the meantime they have approved new clinical drug trials which could be promising to help control the SIB (Self Injurious Behavior). He will keep us posted if anything comes up. We are on a list for clinical trials if it is non invasive.

Dr. Anselm is a believer in DBS (deep brain stimulation). It has helped some LND patients with Dystonia and SIB. She has had some great results with some of her patients. However none of them had LND. She thinks Christopher is too young for this treatment at the time. His head needs to get larger. She is also going to do some research on some new drugs for Christopher.
They are great doctor's and spent over two hours with us. We are going to meet with them every six months.

Christopher is going to have a Spiral MRI on his kidneys to see if they have been damaged by the uric acid. He is also going to have a MRS. Which I believe shows the fluids in the brain. I have to look that one up.

So we left feeling great about the doctor's but not so great with the options now available. They both said since Christopher is comfortable at the time we will continue on the same drugs. If his behavior changes or his Dystonia get's worse we will make a decision on what to do next. DBS (which scares us) and or new drugs.

I am very optimistic and hopeful for a break through. Please pray for our Christopher and a cure. I will keep you all posted.

Love The Dennesen's

Words................

2010-02-04T17:03:00.000-05:00

For the first time ever!!!!!!!!!!!! Christopher said MaMa clearly!!!!! I ask him if he said MaMa he said Ya! Wow!!!!!!!!!!!!!!!!!

Ryan

2010-01-30T15:08:00.000-05:00

Christopher's brother Ryan is now 5 years old! He was just registered for kindergarden this week! He is such a loving and caring brother.

New Diagnosis

2010-01-27T15:39:00.000-05:00

Hello Family and Friends,

Chris and I thought it would be a good idea to have a blog for Christopher now six years old. As most of you know our journey has been a tough one. This is a brief explanation of his story.

I had a wonderful pregnancy and had a horrible labor experience. Christopher was born emergency c-section after 24 hours of labor. We were told we had a perfect baby. At six months we knew there was a problem. Some knew sooner.

We called in early intervention and he had PT, ST and OT until 3 years old. We also started an alternative therapy called ABR since he was 2 years old to present. I preformed this therapy 4 hours a day manually. I will explain ABR later. We brought him to Children's Hospital Boston and was told at first he had Hypotonia. Then months down the road with no milestones advancing we went back to Children's. We were told he had Spastic Quad Cp with Dystonia. So I researched everything I could about Cp every day. Joined support groups etc. Our job was to do everything possible for our son. He started a wonderful special needs school when he turned 3 and is having a great time on the computer and playing with his classmates.

After his sixth birthday Christopher started biting his upper arm and wrist. We thought it was out of frustration since he is non verbal. After he lost his first tooth he started biting his lower lip non stop. I had to make a mouth guard for him to wear 24/7. I called Children's and talked to his Neurologist Dr. M Fayad and we started some new medications for his muscle spasms and for the self injury. He never stopped biting his lip. His PT called and a friend saw a show on TV The Boy Who Bit Himself. I did research and immediately knew he had Lesch Nyhan. I called Children's and had his blood work done along with mine because the mother is usually the carrier. It was confirmed he has the disease I was not the carrier. We found two wonderful dentist's Dr. Perlman and Dr. Koidin who made a great mouth guard to stop the biting and a orthopedic specialist John Wall that worked with me on some arm splints so he can not knock the guard out.

So here we are on a new journey. Not a fun one indeed. I have already contacted Dr Nyhan and we have some wonderful new Dr's from Children's. I am now doing research on Lesch Nyhan everyday. I will keep you posted and will be adding more information to this blog soon. Including photos, links, fund raisers, etc. Please pray for Christopher as he has a long and hard journey ahead of him.

Love,
Lisa, Chris, Christopher and Ryan