Holidays

I haven't written in a while. I need to get better at this next year - it can be my resolution! Overall things are going fairly well. We have the boys on a good sleep schedule - both in their own rooms - so we are all sleeping better which helps us all be less crabby. We still have our ups and downs - as it will always be. Holidays are tough - happy and sad. We are still holding out hope for something to come through that can help the boys and all the other MPS kids. As for specifics, Ryan is doing GREAT in school. He has a great teacher and aide all to himself! They are so good with him and you can tell they really care about him alot. He is actually supposed to get a new boy in his room so he will have a "friend". I dont know any specifics about the new boy but he is supposed to start after the holidays. Ryan gets along with anyone so not too worried about it. Brayden is a typical 2 (almost 3) year old. Temper tantrums galore! But, he can also be the most cuddly sweetest boy. He is such a cuddler which is great b/c Ryan never was too in to that! The boys really interact now which is great including wrestling around. Brayden just loves his older brother and always wants to know where "Ry Ry" is :) Hope everyone has a happy holiday and a happy and HEALTHY new year!

Finally an Update

I have been bad about updating the boys blog lately. Seems like things are so crazy lately. The boys are doing well overall. Still active and happy and enjoying life. Ryan started kindergarten last month though his current assignment is not working out as we had hoped. He was put in an integrated classroom of 27 kids. I knew it wouldnt work but we wanted to give it a try. Well, it didn't work. We are exploring moving him to another elementary school in the same district where he will be in a smaller class with kids needing "emotional support". It isn't really the perfect fit but it will be better than where he currently is. It is sad b/c we like the school he is at now and the principal, teachers, aids, etc have all been so good to us and Ryan. But, we have to do what is best for Ryan.

The other recent news is the golf tournament that we had last weekend in Sugarloaf, PA at a golf course near the town Carl grew up in and he and his brother Jamie worked at for several summers. Between the tournament and the donations we raised around $40,000 for Team Sanfilippo!!! We couldn't be happier - well we could be happier if this money could help us find a cure!

Summer

The summer has been going very well for us. The boys - especially Ryan- love to be outside. It has been unbearably hot but that doesn't seem to bother Ryan. Ryan is doing well in summer school with his familiar surroundings and same teacher and aide from last year. We are getting nervous about kindergaraten in the Fall. It will be a huge transition for all of us! Brayden is not progressing in speech very well so he is going from speech 2x/ week to 3x/week. I think they are going to increase his PT frequency also. Otherwise, the boys are doing well healthwise. We hope that the genestein will help them ... we are waiting for result from their most recent urine screen to see if their GAG levels have decreased further. We are going to the beach for a long weekend next week and the boys will really enjoy that. Hope it cools down a bit!

Camp

On another note, Ryan started a week long camp today at the Mary Campbell Center. Believe me, I never wanted to have to step foot in the MCC - it is sad to see the people that live there. But, the camp for kids really is wonderful and Ryan has been having a great time there! He has been so exhausted every night this week. Today they are taking a bus trip to the Herr's potato chip factory! He will enjoy the bus trip much more than the actually factory but it will be interesting to see how he did today! The director and volunteers there are wonderful with the children. We will definitley send him there again.

Inaugural Beat MPS 5K

We had a very successful Inaugural Beat MPS 5K this past Sunday. Many people came out to support our family and a wonderful cause - despite the awful heat and humidity! We were especially happy to see so many other families effected by MPS - some familar faces and some new faces! We are still tallying the money we raised but we are very happy with the numbers we are seeing. Thank you to everyone who helped put this event together - we could never have done this alone! We just pray that every dollar we raise will get us closer to treatment and a cure for this dreaded disease.

We have had a good couple of weeks with the boys. Ryan really seems to be behaving better - for the most part. He still has his moments of course but they seem to be fewer and less frequent. Ryan and Brayden have really been playing "together" alot more lately - it is great to see. Mostly they like to wrestle! Brayden holds his own with his 59 lb brother! The nice weather is always good for us because Ryan LOVES to be outside. We have had the moonbounce up the last two weekends which they love and which tires them out :)

We are getting anxious for the upcoming Beat MPS walk/run in Wilmington and really hope it is a success.

Cardio appt went well for the most part. EKGs looked good. Ryan was really good...not sure what that was all about - ha! ha! Brayden on the other hand was not so good! He did not want any stranger touching him at all! Anyway - gonna wait another year to have the cardiogram since they will have to sedate them and we try to limit that as much as possible. Everytime Ryan has been sedated he comes out of it very agitated and they were very unpleasant experiences for us (and all the other people in the hospital listening to the yelling...).

Ups and Downs

Things have been crazy lately - lots of ups and downs. Ryan is no longer able to stay in private daycare. They are unable to care for him at this point. The daycare has been very good to us and it was a hard decision for them but I knew this day was coming. Ryan has been doing a lot of kicking, throwing and hair pulling and I am always waiting to hear that he really hurt someone. He doesn't mean to hurt anyone - he just doesn't know how to communicate. He simply doesn't understand. It breaks our hearts though b/c he has been with many of these same kids since he was 6 months old. He has two girls he talks about constantly and it is sad he wont see them anymore. Brayden will remain at the daycare. He is still behaving normally for a 2 year old. SO - now trying to figure out what to do. I am looking into different options for the summer.

We are finally taking the boys to see a cardiologist tomorrow for some baseline tests. The list of doctors we are supposed to follow with is very long and I hate dragging them constantly back and forth to the doctor. They really dont want to be there and believe me - they let everyone know!! So, my mom is coming for extra reinforcement!

Ryan has been getting some bad reports from school lately. He has been more "aggressive" - kicking/throwing toys, kicking/hitting/pushing kids, pulling hair. He does not have any mean intent when he does these things. He just has so much energy inside that he has to get out and he does not know any other way to express himself. However, other five year olds do not understand that! He does have one little "girlfriend" who he talks about CONSTANTLY! She is such a special little girl. Apparently Ryan pulled her pony tail the other day. She was initially upset but then told the teacher that she knows Ryan didn't mean it. No wonder Ryan likes her so much :) He is quite the ladies man... If I could only explain to him that pulling a girl's hair is not the way to win her heart!

Dentist

Ryan had a dentist appt this morning. We so dread dentist appts! It always takes both of us to get through the appt. Anyone with a child with Sanfilippo can surely relate! But, good news is - NO CAVITIES! Not sure how that happened since he rarely lets me brush his teeth and when I do it is a very short quick brushing - usually while I have him wrapped in a towel. He is one strong boy so I can only hold him in the towel for so long!! Anyway- we were glad he only bit the hygienist once :)

HAPPY 2ND BIRTHDAY TO MY BEAUTIFUL BLUE-EYED BOY! WE LOVE YOU BRAYDEN!

The last week has been a long one. We went last week to Baltimore to see a geneticist at University of Maryland who is willing to follow our boys. She and her staff are wonderful and we are so happy that we found a doctor willing to help us. We have had some very disappointing experiences with doctors throughout this whole process. We had Brayden evaluated for early intervention and he will start with therapies next week. Ryan has been off the last week or so. He has had several crying/sobbing spells that last from 1/2 hour to an hour. We have no idea why he is crying. Then he just stops inexplicably. He has also been waking up like he is having nightmares. Not sure what is causing that. Our Brayden will be 2 years old on Friday!! We are hoping his birthday party isn't snowed out.

Branching Out

I figured it was about time I figured out how to create a blog. We will see how it goes. Many of the other families we have met with children affected with Sanfilippo have blogs and it seems to be a good way to keep friends and family aware of how things are going and to keep the public also aware of the challenges facing children and families affected by Sanfilippo and ways they can help. Sanfilippo children are very special children and I hope through our blog you can learn how special they are.