Letter From Mom

Mom's letters keep us updated with what is going on in Aidan's personal life.

Hi friends, can you believe it is 2014 already? Boy how time flys! Aidan is getting to be such a big boy! This has been a very busy time for him. Aidan started fourth grade this year. It gets easier every year getting him adjusted to getting to bed earlier as normally he is a night owl and a "sleep-in" kind of boy. He did a great job at it and thankfully saved the grumbling. He likes his teacher and I only heard positive things about his class. He's learning to be more independent each day! He continues to decide whether to pack or buy his lunch based on selections, gets himself out of the car in the morning (sadly, no more kisses goodbye for mom because his friends may see), and shows me what is in his folder each day after school as he talks about his day. As Aidan grows older he becomes more independent. Aidan occasionally rides the bus, but prefers being a car rider. It seems he is making a few friends this year. To improve Aidan's reading skills, he reads every night and loves Book Club day at school. Aidan took an advanced Math class over the summer. School isn't always Aidan's favorite thing as he says they give way to many tests.

Aidan sleeps in his own bed now which has been a HUGE change in the past three years as he has co-slept ever since being diagnosed. He understands rules and tries his best to follow them. His bedtime now is 8:00 p.m. to bed and TV off by 9:00. Sometimes the little stinker tries to outsmart us by turning the television back on after our last check on him and just turning the volume down. He's a sneaky little booger! Sometimes I get asked to have an occasional sleep over in his room with him and sneak in some much needed mommy-son snuggle time, but no complaints here, he is only little once and I'm sure these moments are numbered. Aidan's family moved into a new home last year and Aidan chose to decorate his room in a Mind Craft motif. Aidan has been taking swimming lessons for a few years now and progressing nicely. Swimming is also good exercise for his muscles. His new home has a pool and he is excited for warmer weather so he can start enjoying it.

Aidan did play basketball this year. We purchased a basketball stand for home so he could practice. He seems to tire easily, a symptom of his HPP. It is thought that once Aidan starts getting older running sports like soccer, football, etc. will not be acceptable for him due to his illness and likeliness to tire more easily and inability to "keep up" with the other kids, plus the increased aggression always adds an increased possibility of a more likeliness to break some bones, an avenue I want to prolong going down as long as possible. It is also thought that with the more running he does the bigger possibility of having more "pounding" type stress fractures. Aidan does complain more and more about his legs hurting. This occurs even without activity, especially after sitting for long periods. Aidan does say that while sitting in school, both his back and legs do hurt. He also feels the aches and pain in his legs after sitting through a movie. Aidan also says it takes a while for his legs to "wake up" in the morning. We will continue to look at other sports and activities he can safely participate in. Aidan does enjoy attending the Phillies and Flyers games. It is less tiring to watch them play.

Aidan has been very busy playing with his brothers, and now a little sister, cousin Davie, and friends! He loves to play Bakagun and with his Nerf guns, or just chilling out and playing some games on his X-Box or I-pod. He loves playing X-box live, because he can play with and talk to his friends. Aidan is a great team player and always helps the underdog in anything he attempts. Frequent trips for us include trips to the park, bike rides (though most of the time he gets away with riding his electric scooter as riding his regular bike tires him out after a short distance), bowling, wrestling, playing laser tag, going to see the latest movie, or going to Chuckie Cheese. Aidan loves Texas Roadhouse for their peanuts and dinner rolls with cinnamon butter, McDonald's (for the happy meal toys), Rita's for some good green apple or peeps water ice and Maggie Moos for some yummy vanilla ice cream! His favorite store to shop at is still Toys R Us- "where a kid can be a kid". His latest interests are Skylanders and Trash buddies.

Health wise Aidan is doing pretty well right now. He continues to have fewer teeth than normal; most of which are very mobile (the only two that are not are the two "permanent" six-year-old molars that recently came in). One of the most exciting things at the end of 2010 was Aidan's two front bottom permanent teeth began to come in. So far, so good. Let's just hope the tooth fairy doesn't have to come to our house any time soon. Aidan visits his local dentist often and they seem hopeful. Cross your fingers for us on this one. As of yesterday, Aidan only has two baby teeth left. One tooth has been trying to come in for a while but just doesn't seem to want to break through. We find ourselves eating spaghetti several times a week, smushing his sandwiches down so he can bite them and fit them in his mouth, cutting hard crust off of things, debreading hard breaded chicken fingers, and cutting things into extra small bite-sized pieces, but he is managing to get by with compensating. I can't imagine how he eats what he does eat! The thought of every day eating and biting down on hard things with all of my teeth loose and wiggling would leave me quite miserable, but he takes it with a grain of salt. On our latest trip to the dentist he was told to decrease his intake of drinks with "acid" in them as this helps promote tooth enamel damage so we have been working hard on finding different "smarter" choices on drinks and we continue to brush his teeth several times a day in order to preserve what he does have and prolong their presence!

Aidan went for a well-child visit in October. All went well! They said they could barely hear his heart murmur. He is in the somewhat normal range on the growth chart as he looks to be FINALLY putting on some much needed weight and bulking up a bit. Again, as it is delightful to see in a boy that used to be pale and thin, it is also a bittersweet accomplishment because increased weight means increased stress on his bones and body, so it is somewhat frightening to see how this will affect his future. Aidan did have a scare two days before Christmas of this year. Aidan and his cousin were playing X-box live. Aidan started feeling faint and said his chest felt like an elephant was sitting on it. He also said his arm felt funny. Davie convinced him to go tell an adult and Aidan was taken to the hospital where mom works. In the end, the doctor feels that Aidan was having a panic attack, but said if another episode occurred to bring him in immediately for medical care and intensive tests to see what is going on.

Aidan will return to Shriner's Hospital in St. Louis in July 2014. It will be another week of data compilation and meetings with Dr. Whyte and his research team to learn about more breakthroughs and research and experimental results that have been continuing to unfold dealing with Hypophosphatasia. You can read more detailed information on Aidan's visits to Shriner's on his Trips to St. Louis page. As Aidan gets older I believe these trips are going to grow harder for him because it is only pointing out the obvious to Aidan that he is in fact unique and has to undergo things that plain normal "healthy" boys and girls do not have to go through. I believe that each needle stick, interview with the physicians, exams, urine collection tests, x-rays, scans, and multiple other tests will become harder and harder and require more and more explanation before being completed.

Several key things have happened to Aidan in the last year. Our non-profit is growing as we continue to build our foundation. Aidan attended our three day Harvest Festival once again. He is getting more comfortable being a public figure and speaking to people about Hypophosphatasia. Aidan finally got a baby sister, Madelyn. Aidan also attended our fundraiser, as we partnered with the Nascar Foundation at Dover race track. When visiting his mom mom he goes swimming in the lake. Aidan is an avid swimmer and barely relaxed on the float. He even had to help a few of us get back on our floats; we won't mention how we got off of them in the first place. We went on a fun filled vacation to Outer Banks. Aidan loves hiking and exploring. Aidan just came back from his second Disney Cruise. He sailed on the new Disney Fantasy ship. Aidan was very excited about the water park on board and couldn't wait to try it out. He finds water activities to be very relaxing, although tiring, so he paces himself. He also enjoys the hot tub after a day of activities. Aidan also enjoyed spending time in the arcade and even got mom mom on a wild ride. Hopefully, Aidan will remain in good health and things will all go well. Keep us in your thoughts and prayers!!! Thanks for your support!

With great love and thanks,

Laura Schiavoni
(Aidan's mom)