Summertime

Things have been tough lately. I go through periods of time when I am so strong... never cry and just go on with life like nothing is wrong - enjoying the kids - living life. Then one day something will happen - nothing major - maybe just something small - and it knocks you right into reality. For instance, I may see a parent taking his or her two chidren up to Rita's to get some water ice. Both kids standing there so patiently waiting to order. And I think - we cant even take our kids up to the water ice stand b/c it is on a busy highway and one of them will try to run in the road or one of them will knock some other kid over or just generally cause a big scene. What people dont realize is it isn't always the big things that you cant do that really hurt but the little things that most people completely take for granite. And why wouldn't they...they dont know any different? I am just at the point now where I just think this all sucks! You can't help but think what the hell did we do to deserve this! Marriage is hard enough with out having to deal with caring for two special needs children and all teh strains that puts on your relationship as well as your relationships with other people as well. You do really find out who your true friends are though. I can say we are blessed to have the supportive friends and famiy we have. Well Ryan has been starting to talk less and less. He still says things from time to time - mostly repeating but I am afraid there isn't much cognition there. Brayden does so well with cognition - he understands way more than Ryan ever did. But, he really has never had much vocabulary. They are the sweetest most lovable boys - they love their family and they love their friends. They both love school which makes working easier knowing they are cared for and happy. As for good stuff, we are heading to the beach for a week which is always fun for the boys. WE are going to Disney in October for Ryan's Make A Wish trip. We are excited for that as well. Ta ta for now...

Difficult

Spring has been a little difficult for me. Everyone is talking about their kids little league games and plans for summer camp and it always hits you like a rock that your kids can't do those things. Sometimes it is just sad to realize that life goes on regardless. Kids will grow up and learn new things and discover new things while our kids lose abilities and forget how to do things they once knew how to do - simple things like counting to 10 or knowing their colors. Also as our kids get older it become more evident that they are "different" from their peers and you feel like you are in a world of your own - and it feels very alone sometimes. I know we are not alone but it still feels like it at times. Despite my little funk, the boys are doing well for the most part. Brayden had an echocardigram and showed some mild thickening but doctor said that was normal for a child with Sanfilippo at this stage and it isn't affecting his health in any way. Ryan still needs to have an echo done and we are concerned because he will likely need to be sedated. Brayden is a very lively child with quite the personality. He unfortunately has very few understandable words. He however seems to have a higher cognition at this age than his brother did (while Ryan had better speech). Brayden often does things that "normal" 3 years olds would do and you think to yourself - maybe the doctors were wrong and got his diagnosis wrong... but we know that is not true. Ryan is doing well. He seems to be getting stiff in his legs at times but he is still very active - running, swinging on the swings, jumping on trampoline so he is doing well. Well - that is my update for now!

It's Me!

I know I have been bad about updating my blog! Life seems extra busy lately! The boys are doing well. We dealt with the normal winter illnesses but besides that they are currently in good health. Ryan is doing great in kindergarten. I can't believe he is almost finished with the school year! Then he will be a first grader :( I am so proud of him - everyone who meets him just loves him.... he has become quite the little celebrity at his elementary school - Brandywood Elementary. The teachers, staff and parents are putting a team together for our 5K in June and are even getting T-shirts made. That means so much to us to know they love Ryan that much! Brayden is doing well also. He is a fiesty one! He keeps us on our toes! For all the challenges we face, and for all the times I am tired or stressed and think "why me?" or "why them?" I turn around and see one of them smiling with those beautiful dimples and I think - man I am lucky to have such wonderful children in my life - so full of innocence and love and wonder. At this point it is hard to imagine my life without them - and I dont even want to think about that so most days, I don't. I prefer to stay active and focused on positive things b/c otherwise I would be in a straight jacket in a home for unstable people. SO, I choose to remain stable (well at least somewhat LOL!)

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.