Happy Halloween!

I present Tinker Bell and Peter Pan (and Captain Hook). Tons more to share later but we all had a very Happy Halloween! We hope you did too!

 

Goodbye Curls

We waited as long as we possibly could. He was being mistaken for a girl. His hair was longer than Olivia's. He had ringlets. It was time! But I miss those sweet baby curls. My little boy is growing up too fast!

The before.



The after.



I can eat with a spoon all by myself and I love mashed potatoes!



Enough with the pictures Mom.

Pumpkin Decorating

I am not brave enough to attempt pumpkin carving without Mike but we did do some pumpkin decorating earlier this week. I've had this pumpkin decorating kit for 2 years! I picked it up on clearance before Peter was born and I'm thrilled we were finally able to use it! I'll have to look for another kit this year in the post-Halloween sales, maybe something that it's quite so girly.





Look at that concentration!




Teamwork!





The Finished Product! Have you ever seen a little boy more proud of a princess pumpkin?

Olivia School Update

I started this post earlier in the week but we've had a very busy week and this post turned out much differently then I initially expected!

This is a video that I took on Tuesday morning as I dropped Olivia off at school. She LOVES going to school.



I like her teacher and the classroom aide but over the last several weeks of school we have developed some concerns regarding Olivia's safety in the classroom. The teacher and the classroom aide are doing all that they can but it's just not possible for the two of them to manage the class load. There are a total of 10 other students in the class and they all have their own challenges. Olivia is one of the happiest children in her class and she also seems to have the most significant challenges. Olivia doesn't quite need a 1:1 at this point but all of the children in the class would benefit from the addition of another aide. We had an IEP meeting this Wednesday to discuss her new orthodics (which I'll cover in another post) and her safety in the classroom. I dread going to IEP meetings but I think that I am getting a little more comfortable and I was expecting this to be a quick meeting. I had written a strongly worded letter expressing my concerns with Olivia's safety in the classroom and I shared that with the team. At that point the Director of the Preschool Program and the Physical Therapist then expressed their concern with Olivia's lack of progress towards her IEP goals during the first 9 week period of school. They thought we should then discuss the possibility that Olivia's needs might be better met in a home based educational setting. The more I think about what happened during this meeting the more angry and confused I get about what happened. At this point I feel like I lost it (the teacher and speech therapist have since assured me that I didn't really loose it). I know I've mentioned before how much I hate that I get so emotional during these meetings because I know I'm not able to advocate for Olivia to the best of my ability when I'm so emotional. Olivia has attended school fewer than 25 days over the last 9 week period (she had surgery to remove her port, we went on our Make A Wish trip, there have been 2 teacher inservices, 2 holidays, and Olivia had an ear infection so she missed a few days). I had no idea that a change of venue would be discussed at the meeting. I could go on and on but basically it is my personal belief that they are concerned about her safety as well and would rather her be removed from the classroom environment than modify the school environment to make it safer for Olivia. I received a lot of support from other parents with children with MPS and Sanfilippo syndrome and I learned today that the school began the process of hiring an additional aide for the classroom. I've received some great feedback from the teacher as well as the school principal regarding the way I handled things during the meeting.

At this point I am very happy with Olivia's teacher but I am concerned about the professionalism and competency of the District officials I've met thus far. We revised her IEP goals and will be meeting at the end of the next 9 week period. I don't think I'll attend another IEP meeting alone. I am thinking of scheduling an appointment with a psychiatrist to discuss my anxiety and ability to control my emotions during IEP meetings, perhaps they can give me something? I've thought about having a stiff drink prior to the meeting but I would hate to come in smelling of alcohol. Has anyone out there reading ever tried anything like this? Any advice?

P is for P-U-M-P-K-I-N

I am so behind on my blogging! A couple of weeks ago we headed out to the pumpkin patch and had an absolute blast.

Here are a few of my favorite shots as we searched for the perfect pumpkins!

 

And here are a few of my other favorite shots from the day.

Olivia and Daddy.

 

The cutest little feet ever on the Hay Ride.

 

I love this picture that I snapped of Peter but I hate that he looks so old! He's growing up too fast!

 

Enjoying the Pumpkin Ice Cream. YUM!

 

How'd you get up there?

 

My hunky hubby and his pumpkin hunting cargo.

 

WISH--The Final Recap

I have FINALLY finished the photobook documenting our Wish Trip. Throughout the trip we were very aware that we were smack in the middle of a once in a lifetime type experience. We made sure to take plenty of pictures but at the same time we were all very conscious of living in the moment. As a result we have tons of pictures from our trip but we have so many more memories that will last a lifetime.

Click here to view this photo book larger

On the right track

One of the realities about being a parent to a child with special needs is that it's all uncharted territory. I feel like I float along bouncing from therapy session to intervention meeting to seminar to doctor appointment and then all around again. All I know for sure is that I love my baby girl and I want to do everything I can for her. It doesn't help that Sanfilippo syndrome is so very rare. There are moments of amazing clarity when I know without a shadow of a doubt that I am on the right track. The universe aligns and someone happens to say just the right thing at the most random moment. These moments give me confidence and inspiration and they allow me to just relax and enjoy Olivia for who she is. Those moments make up for all the ridiculous and ignorant things that people say without thinking or realizing what their words mean. Today I had two of those special moments and I am so grateful to know that I am on the right track!

Fabulous Fall

We are all about Fall around here lately. I had a really hard time letting go of summer but I am thrilled that fall is here! I've pulled out the decorations and the kids and I had fun decorating together after school. Olivia was trying to eat spider webbing and Peter was chucking fake pumpkins all over the yard.



Peter is talking up a storm lately and has added several more seasonally appropriate words to his vocabulary including: "spider", "pumpkin", "feeves" (pronounced by the rest of us as "leaves")and "gobble gobble". I enjoyed my first Pumpkin Spice Latte of the season and Peter loves the Starbucks Pumpkin bread.



I've pulled out all my fall Bath and Body Works candles. Their fall scents are definately my favorite! I love them all! I've cleaned out the kids closets and replaced the short sleeved PJ's with the ever adorable footie PJ's.

 

And last but not least we've embraced football! We all are enjoying watching football. Peter and Olivia get into it by chasing each other around and tackling each other. This is the perfect fall football song. I happened to finally see the video the other day and I loved it so much that I had to share!

Sibling Love

 

Not My Son!

I know you'll have a hard time believing this but my darling son has broken my nose! Now I can laugh a little about it, I wish that I could figure out how to scan and upload the xray but it's too large for our home printer/fax/copier. It happened over the weekend when we were in DC. I was playing with the kids and we were having a good tickle fight. It was Olivia's turn so Peter and I were both tickling Olivia, he sat on my lap and Olivia was laying in front of us. Peter tickled Olivia and she laughed and then Peter leaned back and the back of his head smacked me right on the nose. I heard a loud crack and felt an intense amount of pain. Peter's head hurt but it he pretty much shook it off and kept playing. I knew I was out for the count. My nose hurt quite a bit and it bled a little but there wasn't a ton of blood. Mike came upstairs and I told him about it. My "army strong" had absolutely no sympathy! He said he'd drop me off at an ER somewhere in DC and I could just text him when I was ready to be picked up. NO WAY! I didn't want to spend our vacation time waiting in an ER somewhere. My nose continued to throb but I knew there wasn't anything they would do to it anyway. I broke my nose in highschool and I knew there wasn't much they would be able to do at the ER anyway. I continued to complain about my nose for several days, it even hurt to put my glasses on. We were at the doctor on Wednesday for an appointment for Olivia (but that's another story) and they were going to do a chest x-ray for Olivia. I told the doctor about my nose, she agreed that it was probably broken but there wasn't much they could do about it. She insisted that we take an x-ray since they were already doing the chest x-ray for Olivia, we couldn't pass up this opportunity for the ultimate mom guilt trip later on. The xray shows that it's broken but it's not deviated right and I'm not having difficulty breathing. As long as I am careful not to knock it over the next few weeks I should be good. It does still hurt though, pretty badly! At least I have this little face around to cheer me up!

Please Vote

If you have a minute please consider voting in the LIVESTRONG Community Involvement Project for the SuperSibs Pediatric Oncology Sibling Support Program at Duke.
SuperSibs! provides ongoing, targeted support to an underserved and often unrecognized cancer survivor population: siblings of children with cancer. SuperSibs! ensures that these children, the “shadow survivors,” do not feel alone, insignificant or forgotten, and can face the future with strength, courage and hope.

http://vote.livestrong.org/applicants/155-duke-pediatric-blood-and-marrow-transplant-family/

New Friends

When we were in Washington DC we were able to meet some new friends. I've followed their blog for quite some time and it was such a pleasure to finally meet them! It is always such a special experience to be able to spend time with other families affected by Sanfilippo syndrome. There's so much mutual understanding and acceptance. We met up for dinner and a walk while we were in DC. Unfortunately the pictures didn't turn out very well. I think that the camera was still on a landscape setting or something from earlier in the day. These are the first pictures that we took with our fancy camera that haven't been great but maybe we'll have better luck next time. Waverly is 7 and Oliver is 3, both of them have Sanfilippo syndrome (type A), you can learn more about them on their family blog: Exploring Holland

Washington DC

Over the Columbus Day weekend we took a last minute trip up to Washington DC. It was a quick trip, we left after Mike got home from work on Thursday evening and arrived early Friday morning. On Friday we hit the town via the Metro. Peter and Olivia loved riding the metro and I couldn't believe that it was Mike's first time on the metro! The weather was beautiful during our trip and we couldn't have asked for a better weekend to enjoy in our nation's capital. A girlfriend of mine had loaned me a Washington DC guidebook which turned out to be very helpful. We headed to the National Cathedral and had a picnic lunch then we walked down Embassy row. On Saturday we headed over to the National Zoo. The zoo doesn't have a ton of animals but it's a beautiful zoo and you can't beat the price (free). The kids were exhausted but Mike and I decided to make a quick drive through Georgetown before calling it a day. We ended up having to cut our trip a little short because the kids were not feeling well but we had a great time and it was a beautiful weekend.