A life less lived

The end of the school year is fun and chaotic even for the best of us. Explain that to a 2 1/2 year old with WS. I don't even know where to start because mostly Aiden is loving and silly and great. Then there is the two year old temper tantrums and endless crying fits. Any change sets him off. Having to go inside from the yard, having to stay in the dance studio waiting room, not being able to go on the inflatables at field day when he wants, having to walk, being carried, trying to get him to stand still for one minute outside the house will set him off into a crying fit that lasts what seems like an eternity. He will throw himself on the floor and kick and scream. Just started screaming "No" and hitting as well. I really don't know how much is him and how much is WS. My daughter was really easy and didn't have a terrible two's period. He crys if someone rides by on a bike( he wants to ride it) and if I don't let him have one of his sisters toys.I worry how the preschool will handle his tantrums.Another thing that I have noticed is his constant wandering. At field day and a recent wedding he didn't stand still for a second. He'll walk around in circles and sometimes stop to look at something and then he is off again. He has no fear of being far away from me. At field day I let him go ( I could see him the entire time). He walked half a football field and never turned around once. When I ran up and turned him back in my direction it set him off in a crying fit. I watched as other kids his age sat quietly by their parents and played with a toy or watched the kids competing. I know the second I open the stroller straps he is off. There is no rest for me after that point because I can't get him back in with out a fight. At the wedding I walked in circles around the room for three hours following a wee man on a mission.People tried to stop and play with him, he would stop for a few seconds and then be off wandering again. I was able to strap him into a booster seat for a few bites of food and Mike was great entertaining him in the booster so I could eat. I was exhausted by the end of the night and missed out on spending more time there with Autumn.
Things to appreciate this week-
Autumn FINALLY growing some teeth . Four missing for six months
Aiden saying "read dinosaur" when he saw a dinosaur book in the store.
Mike for being so great at the wedding
Mom and Dad for the kids swingset! Thank you

Wow I can't believe how long it has been since I have written. Happy to say my mom is doing great. The surgery was a success and she is recovering day by day. I am looking forward to taking a break from homework and soccer games! Therapy is all summer long so no break from that. I am officially taking the first week of July off from Therapy though. YEAH!!! Aiden continues to do well. We were released from the eye doctor. WoooHooo. No glasses for now at least. Endocrinologist and orthopedist this month. Nephrologist next month and then a break from specialists until September.
Just completed Aiden's preschool testing. Two days worth. OT,PT,Speech and psychologist. From the verbal feedback he has slipped from -1.etc deviations to -2 etc deviations. Haven't gotten the reports yet. I know he will qualify for preschool and to continue his services. As he gets older the delays are more and more apparent. I watch the other kids talking and playing together at the mommy and me class and then see Aiden wandering around playing with each toy for a second and then moving on to the next toy. He sits with me during circle time but doesn't really sing or do any of the finger play that goes along with the songs. He sits nicely at the table for snack time but then again snack is usually stuff mom doesn't give him at home! He is talking alot more than he used to . Maybe half of which I understand. He is still using mostly one word utterances. Haven't seen any progress in his gross motor although his PT says he is getting stronger. I have been thinking about his heart alot lately. I was getting a bit comfortable but was shaken up the last cardiology visit. The arterial side was "slightly " worse but hearing about any degree of change is scarey.
Can't wait to see the kids in our pool and just being kids! Everything else is put on the back burner when the kids are laughing and just being kids. We have a swingset coming this week(Thanks to my Mom and Dad :-). I don't know who is more excited me or the kids.
We had a really neat experience last week with a photographer from the Littlest Heros Project. Its amazing a seveteen year old girl started the sight to bring joy to kids and families with disabilities. We applied and got chosen to have a photo shoot at no cost with a local photographer. I'll post some pictures when I get them.
Things to remember from the month of May _Autumn's toothless smile. Aiden's "ahhahh" Hugs. Dad building my raised vegetable beds.Mike climbing in the inflatable bouncer with Aiden. Aiden's first pony ride. Mom being healthy after cancer surgery.