Before and After pictures

We had a busy weekend!! On Friday Libby had Color Day at school (formally known as Field Day) I took the boys over in the afternoon to witness some relay races and tug of war. Many of you have heard about our chipmunk incident by now. As we were leaving for Color Day I heard a squeak which sounded like a bird. It was a chipmunk that the cat had cornered behind a piece of furniture. After trying unsuccessfully to get it out of the house with a broom, I called Mark. He begrudgingly came home and after some banging around and a wall made out of couch cushions, he got the chipmunk out the front door!! I took this picture of him in case he decided to leave during Mark's 45 minute drive home from work.

Friday night we had our camping adventure in Aunt Kate and Uncle Jon's backyard! The tent they borrowed was enormous!! Uncle Jon built a fire and we cooked marshmallows and made s'mores. I had major anxiety about the kids running around the pond in the dark but I tried my best to let them be kids and not hover over them. Libby freaked out a little bit before going out to sleep in the tent. Mark was able to calm her down pretty quickly. It rained overnight, but they all stayed dry and none of the kids woke up until sunrise! (Mark takes credit for staying dry as he took extra time putting the canopy up over the tent.) The kids had a great time!!

That brings us to Saturday morning when Mark and I drove home separately. Nathan had his class at Little Wonders so I took him to class.

After Little Wonders, Nathan and I went grocery shopping. That is when I got the call..........Mark (without prior authorization) took Bennett to the barber shop and got his hair cut and it is really really short. It definitely needed a trim so I am fine with the hair cut, but the barber cut a little too much off in my opinion. All his curls are gone!! It has taken me a while to adjust but I am kind of getting used to the new hairdo!! The saddest part is that it got rid of the soft part of his hair and what is left is the wiry type of hair that Nathan has, part of the whole losing his hair thing. That put me in a bit of a funk on Saturday but nothing major. I know they are going to get better so I'm not going to dwell on it. So here is the before and after. The first was taken at Color Day on Friday and the second was taken at Aunt Susie's Memorial Day picnic on Sunday. He has a matching hat that goes with the blue outfit but Mark took it off almost immediately. Bennett really doesn't mind wearing hats and looked so cute but Mark thought he looked goofy!

Pre-K

School......well, here is the scoop....Nathan is going to be in regular kindergarten soon and I really would like him to be in a regular pre-k. Part of it is to get a feel for what some of the challenges are going to be for him in public school. So I have been exploring some other options. I called one preschool program several months ago. For some reason I thought they received state funding which would mean they would have to take a child with special needs. I have no idea where I got this information because it is absolutely not the case. So when I called, they were fully enrolled for fall but they put Nathan on a waiting list. Then last week the school called and said they had an opening and we went in for a tour. It is a great little program within a church. Initially they seemed hesitant to have him but primarily because I began the discussion with talk of wormian bones, previous hematomas and any other areas of weakness of which I could think. Even as I was talking I knew I was going about it all the wrong way but I couldn't stop myself from talking. Mark was looking at me like, 'what in the world is she doing?'. So out it all came and the director seemed doubtful that he could keep up with his peers. He went this week for a visit and did better than they expected so they would will take him five days a week from 9am -1pm I am elated but also nervous. Sometimes you want something so badly then when you get it, you start to panic. If we decide to definitely move him, it would be a tough year for us in terms of having three kids in three different schools. Financially it would be the same, but he would have much shorter days (now he gets picked up at 4:30). Part of me is worried that I am messing up a good thing. I don't want this to be about me and my need for Nathan to be normal. I do want him to be prepared academically for kindergarten since he will be behind physically. In my heart I think he would really be happy at this new school but then I start to doubt myself and my decision making. I have been praying that we make the right decision.

We are more than halfway to our goal of $3000!! I really think we can do reach the goal! We have more than two weeks left in the campaign!! Thank you for all your help.

Tonight we are having a camp-out at our friend's house! The kids really want to go camping so we will try it first in a backyard before we head out to the wilderness. We'll see how long they last in the tent. They are so so excited!! When I told Nathan, he made a noise of excitement I have never heard before. It was almost as if he couldn't catch his breath! Hopefully it won't rain because we will have some very disappointed kids on our hands. Wish us luck!

1/3 of the way!

We cleared $1000 in donations so we are one third of the way to our goal. Several people have told me that $3000 is quite a lofty goal but we can do it!! I would love to prove them wrong!! (no offense to those who were trying to be realistic) Thanks to all those who have donated so far and especially those that have forwarded the link to family and friends.

Phillie Phanatic

A friend from college invited us to her family's house on Saturday. It was their community day and the Phillie Phanatic was there. To say they were excited to see him is an understatement! Nathan kept worrying all day that we were going to get there late and miss him. Then when we got there, they were terrified!! We finally forced them to get close enough for a picture!

Libby's Wish

Libby wants to know when someone is coming to do her wish. When I explained that just Nathan and Bennett will be getting a wish, she said it is not fair. Such a hard thing for a seven year old to understand. I was at least happy that Nathan's wish is including her. I asked her what her wish would be and once again she said she should get to go to Hollywood. I'm wondering what else could be done for siblings, aside from a wish. Some way to honor them and the sacrifices they make along the way. As the volunteer from Make a Wish said, "siblings take a hit too."

We were joking that in retrospect we should have prepped him to ask for a finished basement in which to play. We could really use the space!! We get some water down there during heavy rains so we could have had Nathan tell them how fearful he is of the water coming in and flooding our house. Maybe we can work on Bennett for the next couple of years! Hmm, two kids that qualify for a Wish? Not good.

Make a Wish

Several months ago we completed the paperwork in order for Nathan to have a wish granted through the Make A Wish Foundation. The volunteer came to the house on Friday and met with us in order to determine Nathan’s wish. We didn’t prepare him much because they (Make A Wish) are careful to make sure that it is the child’s wish and not the parents’. I did not want to influence him. It was a pretty laid back visit and easy to determine. He wants to go “where Mickey lives” so it looks like we will be to Disney World!! Nathan is so excited. Libby is not as excited because she thinks she is too old for Mickey. Her “wish” would be to go to Hollywood to see where her favorite shows are filmed, specifically Wizards of Waverly Place. I have no doubt that she will have fun though and maybe she will be a little more excited after we look at the website. I looked at the Disney website and was completely overwhelmed. I have never had a desire to go to Disney, but it will be great to see the kids so excited! The best part is that it sounds like they treat the kids like royalty! It also seems like they really make an effort to include the siblings and make them feel special too.

Sitting there watching Nathan sitting on the couch with his legs dangling at least a foot from the floor was surreal. He looked so small and different. I couldn’t believe it was us, sitting, talking about, qualifying for a wish. Being in this situation, I realize just what these types of programs do for children and their families. Meeting a celebrity, throwing the first pitch of a ballgame, going on a trip, these things obviously do not change the medical situation; however, they provide a welcome respite from the day to day struggles of being a child or raising a child with lifelong medical issues. It almost feels like a reward of some kind, like recognition that these kids are often the ones standing on the sidelines. For a moment, the Make a Wish allows the special needs child to truly shine! We are so excited and hoping to go in the fall of this year!

Fundraising

In case you are not on my email list or not on facebook, here is a link to our fundraising page on the Progeria Research Foundations ONEpossible website. This happened quite by accident. My BFF Kate saw a fundraising link on another blog and suggested that I do the same. After doing so through 'chipin' I asked PRF if I could legally do so and they suggested that we officially join the campaign. This was followed by hours of me figuring out how to do that, on the phone with them, writing and rewriting my letter to friends and family and figuring out how to do group emails on Facebook.

So here we are with a Team Goal of $3000 by June 15th and we are off to a solid start! Like I mentioned before, asking for donations is something I find very difficult; however, in this situation I do not. I am welcoming any and all donations as they will help to find a cure for our sons. I must admit that sometimes I feel a little bit guilty about fundraising for PRF because so few children are affected by this disorder. By raising money for autism or cancer, you know you are affecting thousands of children so in some ways that seems more worthy of a cause. But this is the cause that chose us and obviously matters to us.

So please, forward this to anyone you know. I am no longer trying to maintain a low profile. Yes I know I have a blog, but in general I don't share our story. Some of the people to whom I sent emails did not really even understand the gravity of the situation! Now I am ready to shout it from the rooftops and share with anyone who will listen. I don't know what this will accomplish for us; however, I feel compelled to do so right now. We will see where it leads us!

so many things....

So many updates tonight. My first update is that the suction bowls that Santa brought Bennett apparently do not work. This is him with his bowl of spaghetti on his head. Of course we laughed which encouraged him even more. He continues to love table food and prefers it over baby food. It is surprising what he can eat with no teeth! Yes, still no teeth....17 months and no teeth!

Mark and I got back on Sunday night from a weekend trip for Mark's 40th birthday. He was adamant about not having a party so I saved my Ebay money throughout the year and we went on a mini-vacation from Friday to Sunday. My mom and a family friend watched the kids for most of the weekend and Sunday Aunt Andrea and Memaw Falcone came and took over. We had a wonderful time!! It was so great to get away from the kids (no offense kids) and all the stress of parenting and parenting children with special needs. I feel like I had an escape from progeria and the worries about the implication for all three of my kids. It was great to feel anonymous for a while and not feel pressure to share information abot our situation. I know that all parents could benefit from getting away for a weekend without kids, finishing a conversation, and just enjoy each other's company. We feel very fortunate that we had a chance to go and are thankful to everyone who helped with watching the kids.

So we are back and the kids had a great weekend too. Nathan went to his first class at Little Wonders on Saturday. He apparently had a great time and did very well. I'm excited to see him next week playing with the other kids.

Bennett is still crawling robot style. I need to take a video to post on here. He is pulling himself up on his knees pretty regularly but still gets stuck in that position. He is typically stuck in the sitting position too; however, lately he has been transitioning to laying on the floor more frequently. Last week he had his re-evaluation for early intervention services. There are no changes with services. According to results of the tests, he is delayed for his age in the area of communication. The physical therapist noted that communication during therapy sessions is limited to his screaming in protest!! That made me laugh out loud! Yes, that would be our Bennett!!!

I know there are more updates but I can not think of them right now. Thanks to all who have donated to the OnePossible Campaign for the Progeria Research Foundation. Your support means the world to us. If I do not have your email address and/or you did not get the email, I will post it on here too.

Little Wonders!

On Saturday Nathan is starting a sports class at Little Wonders, a gym in Norristown that focuses on serving special needs children. Donna's cookie sale is also paying for the class and I am so excited that Nathan will be learning the basics of soccer, baseball, basketball etc. Not the traditional way on a community field, but still something I have been wanting for him. My friend Kamishia told me about this place and it seems really fun. He will be in a class with almost all boys who are 5-7 (even though he is only four) At the screening, the owner and PT said that if I thought he would not be intimidated by the big kids, that would be fine. I don't see Nathan being intimidated by bigger kids. What I really liked about the owner of Little Wonders is that he did not ask anything about Nathan's diagnosis, nothing beyond what he needed to know for assigning him to a class, ie walking, running, balance etc. Sometimes people ask a lot of questions just out of curiosity which I totally understand, but it was really nice that he did not ask. Nathan will be starting on Saturday.

The Magnet

Here is the magnet my sister Donna designed (and paid for through her cookie sales). I think it turned out really nice. You can tell by the length that it was written by me. I had a hard time getting it even that short. If I don't see you on a regularly basis and you would like one, just email me and I will put one (or a couple) in the mail for you. I would love to know that a bunch of people have the boys picture on their fridge and are praying for a miracle for them. I hope people don't think I'm delusional in my hopes for a miracle. I really think that there is hope that these medications or ones in the future could help them live typical lives. Then I worry that I should just accept the diagnosis. But then I guess there is no should when dealing with a situation as unique as this. Anyway, email me if you want one! Thank you Donna!!

Here is a picture of Nathan climbing in the backyard. He has become quite brave. This is nothing for most almost five year olds, but for Nathan this is amazing. In a true role reversal, Mark yelled to Nathan in the backyard telling him to get down and I got the camera to take a picture.

May Fair

Libby's May Fair for school was on Saturday. We all went and had a good time. Nathan and Libby were so cute walking through around holding hands. She is a good big sister most of the time. They had a couple of inflatables, one for preschoolers, a giant slide and an obstacle course. Nathan did the preschooler one without help. He wanted to do the giant slide. Another pat on the back for me because I suggested we let him try. Nathan needed a boost up onto the inflatable and then struggled up the climbing steps (not really steps, just bumps). The line was growing but I really knew he could do it. This is totally against Mark and my nature because we would go to great lengths to not cause a scene or inconvenience anyone but we just kept cheering him on and finally he made it to the top!!! He went back several times after that, each time a little bit faster. I was so proud of him!!

Libby got upset because two boys from her class were in line saying that Nathan was slow. She got out of line to tell us they were making fun of him and she told them to stop but they ignored her. Mark reassured her that she did a great job of standing up for her brother and just to ignore them. Later that night she told me that the boys also said that Nathan looked "weird." I'm not sure how true this is because she went on to say they said something about the veins in his face and then admitted that they didn't say that part. So who knows if she was stalling at bedtime or the "weird" comment really happened. I had the conversation with her about people who pick on other people and how you don't even have to look different to have people tease you. I'm sure it is one of many conversations we will have as the kids grow up together. It seems like a lot of responsibility for us and I hope we say and do the right thing so that she can be a well-adjusted girl.

Bennett has a nasty sounding cough so we are off to the pediatrician this afternoon.