A life less lived

We went to our first of many CPSE meetings last week. I was fortunate that they were all about my age and it didn't hurt that they were all women. Aiden smiled and flirted with them all. They approved him for preschool based on his test results. They gave him an official label " preschooler with a disability". Great, since we were able to get into a good preschool and it means he can continue all his services after he turns three, but man does it stick you in the heart that your child of two and a half has a label already. It kept ringing in my ears even as they approved him for every therapy we asked for and got us into the preschool on the top of my list. Bitter sweet.
Finally sent away the application for the Philly conference. Yeah! I'm glad we are going. Can't wait to meet more families and attending the "writing an IEP "class is on the top of my agenda. I hope to gain a wealth of knowledge from the "experts" and other parents. My parents are watching the kids so it is a vacation of sorts for us. LOL Name twenty other places you'd rather go with your spouse for vacation .
Tonight we all went to a party at my cousins house. I was three hours into following Aiden around in circles as he examined every inch of their house. Having only sat down for a few seconds the entire night I was nearing the end of my patience . I tried to get him to sit in my lap or even sit down long enough to eat something. He had a total melt down screaming and hitting me. At that point there is very little you can do to reason with him. I just kind of wait it out and than distract him with something else. My relatives were trying to help by talking to him but really I just wanted them to leave us alone. I know they weren't going to help the situation.
On several occasions Aiden tried to get into the bathroom, I know it was just because I told him he couldn't play in there. He started crying and trying to squeeze past me to go in. A few people asked if he needed to use the bathroom and I kind of chuckled because he hasn't even started using the potty but I guess they assumed that at his age that is what he wanted. It was really more"I want to go in and mom won't let me so I will try as many times as I can" . Autumn had a great time with her cousins but I was glad to come home. There were countless small random toys, nails, bottle caps, etc for him to potentially put in his mouth so I had to watch him like a hawk. Not to mention the lit candles,scissors and cleaning supplies left randomly ALL OVER the house. I was redecorating her house all night. Moving everything out of reach of my guy.The other kids were all older so their parents didn't pay much attention to the "party favors" that Aiden found. Joy of Joys. I love going out but can't wait till he is a little older. Maybe old enough to sit down for a few minutes and play with a toy or another kid.
Things to be thankful for-
Summer Camp for Autumn. She is one happy little girl. It was a great choice for both of us.
Aiden - for his verion of Yo Gabba Gabba song -Time to Sleep , for rocking Autumn singing "Ahh Ahh Baby" So cute!
Mike- For swimming with the kids today.Hearing the kids squeal with joy
Mom and Dad -For always helping out .Thanks for watching the kids next weekend so we can have a break.
A warm summer day with two kids splashing in the backyard pool. Priceless

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.

Usually an injured child is cause for panic and concern. My life is anything but ordinary so why should something like this be any different. Both kids were home today since Autumn had a fever and Aiden had a slew of therapies. I was in the bedroom putting away some laundry when I heard a scream from the other room. Aiden was crying and screaming. I picked him up and noticed he was patting his left thumb. I thought he might have banged it with a toy , I had only been out of the room for a minute and Autumn was in the same room as him. As I was soothing him I noticed his thumb looked red and swollen. Now I'm thinking he REALLY must have slammed it good. He was able to bend it and soon stopped crying. I put him down and he started saying "buggy, buggy". He had never said this before. He then walks into the kitchen and there on the kitchen floor is a dead yellow jack wasp!!!!!!!! I felt horrible he was stung, how does a yellow jack get into our house in the winter? Then it dawned on me he TOLD ME there was a bug and then showed it to me. I was so amazed I called Mike at work to tell him. He actually was able to tell me what happened. Upon closer inspection there was a raised sting spot on his finger. Within half an hour he was back to his happy self . I'm still blown away and excited by the fact that he communicated to me this way. He is making such progress.Aiden you Rock
My mom was able to come home from the hospital today. Just a day after major surgery. The Dr. was able to do the entire procedure by lapriscope which made it alot easier on her. The lab results come back in two weeks. Her Dr. was very confident the outcome would be good. I spent over twelve hours in the hospital yesterday. I should have my own parking spot there by now.

Autumn has been asking for a Wii. We see the commercial for Wii fit often. I'd love one but they are expensive.Here is how the conversation went....
Autumn:Mom can I get a Wii
Me:Well they are very expensive, I don't have the money.
Autumn:How much do they cost
Me:With all the added stuff probably $300
Autumn:Wow that is alot. I know how we can get one for free!
Me:You do?
Autumn:We'll ask Santa!!
Got to love kids.

I've been searching for something lately and I just realized what. The people I am acquainted with here are small minded. I don't claim to be a genius or superior in anyway..... Let me explain. I spent all day in the hospital Tuesday while Aiden was poked, sedated probed etc. Watching sick kids walking past, seeing parents wringing there hands waiting to hear about the status of their child in surgery. Wednesday the parents I most associate with from Autumns dance class just made me feel like an alien from a foreign planet. I have known them for three years and I guess this was just the last pickle in the jar I needed to make me lose it. One mom was ranting and raving about a clerk at the coffee shop. She was on her feet pacing,redfaced, waving her hands in the dance studio because the coffee girl forgot to punch her coffee card for a free coffee. The other moms joined in to the freak show egging her on about a free cup of coffee that was due. I sat there wondering how she would cope with a child with a disability, how she would handle all the doctor visits and therapy sessions. How would she have handled her seven month old baby laying in a hospital bed after open heart surgery? A Free Coffee? That is what she was up in arms about. I sat there and watched the show. Sad that this was the fight she found so important to fight. How my life has changed. Nothing else is that important. The health and happiness of my kids, my relationship with my husband, my parents . These are the things worth fighting the fight for. All else seems small and silly. I don't think I would be this aware or awake without a child with Williams. It really did change me to the core. Two weeks ago I had a heart to heart with a grocery store check out woman. An older woman I see in the store often. She was so upset and complaining loudly because her last customer told her how to bag the groceries. Are you kidding me. Well I listened as long as I could and then as it approached my turn at the register i explained that other people should not upset her like that. Not to let this ruin her day and to think of the things she is grateful for. I then told her about Aiden and our journey with WS and heart surgery. Her jaw dropped, her eyes glassed over and she said you are right. I shouldn't let something like that get to me. I don't really know why I chose to tell her our story . I guess I just found the issue so silly. Wake up lady, there are much worse things in life. I feel the need to find a grounded friend. My two best friends live an hour and one and a half hours away. We talk on the phone but don't have that daily support. Maybe I'm still in a state of depression or is it enlightenment? What would Buddah do? I'm still reeling with the idea of my mother going in for cancer surgery. That will be my Tuesday this week. I wish fighting about a punched coffee cup was the highlight of my week. Silly silly ladies. I find myself joining in less on the conversations because it is harder and harder to feign interest. For now they serve a purpose, I go out to dinners, my kids go to their kids parties and it is at the very least topic for a very long blog.

Wow it was easier than I thought it would be. My very first slideshow!! I love my babies.

The TriState Fundraiser was amazing. My inlaws and sister inlaw came up from North Carolina. My parents attended as well. I was so impressed by the size of the turn out. Six hundred and fifty people. The auction was great and I danced for the first time in I don't know how long. My Dad cried the entire night. The most sensitive construction worker I've ever seen.It was kind of strange seeing Aiden's picture come up on the screen during the slide show. He has WS and we were surrounded by family and friends that understand. I cried during Rob's speech. He mentioned the therapy sessions and doctor appointments that Julia and Jill have to deal with and it just hit me hard. They get it! I left there with a smile, the food was great, the evening was fun and so much money was raised to help the WSA.

Aiden's much loved cardiologist is leaving Schneider's hospital and going to CHOP. We met with a new Dr. from the cardiology department last week. Aiden cried the entire time we were there. After a very unsuccessful echo she recommended doing a sedated echo. This will be our first and I'm a wreck. The cardiology visits are hard enough and now we have to be admitted, have him fast, and then the ordeal of finding a vein for the I.V. The last time they tried to place an I.V. they had to stick him ten times (three people tried and failed) . My poor little guy. To make matters worse I went online and read about all the complications, rare as they might be, that are associated with the type of sedation they use. Some days I feel like we have a normal family and then days like today kick me in the butt. I had to schedule the sedated echo, reschedule our endocrinology appointment and ran into his OT in a local store. I took him to our very first mommy and me class on Tuesday. He did so great. Played with all the toys, sat through most of circle time, ate his snack at the table with the other kids. I really had to fight hard not to cry . I was so overwhelmed by how far he has come and how much he has had to go through. the other parents have no clue how hard my little guy has worked to be sitting at that snack table with there kids. Hopefully the class will continue to be a big hit with him. The sedated echo is on the same day as our class (tuesdays). I will have to pull him out before snack time on that day to drive to the hospital and have the procedure done. How many of the other moms will ever have to do that?  All in all I take what is thrown my way as it comes. Each day we love Aiden for Aiden and Autumn for Autumn. Looking forward to meeting the other families at the fundraiser this week and my much needed ,greatly earned birthday weekend away from the kids next week.

I've been meaning to add to my blog for weeks now. I love reading other people's but don't take the time to write in mine. I do find it therapeutic . I am so excited about the upcoming WS fundraiser. It will be nice to be out without the kids! It will also be nice to be surrounded by people who support the WSA and families with WS. We were lucky enough to meet five other families from New York this weekend. Rob and Jill had a few families over. Aiden had two little friends. They were only six months older then him. We also met Susan (an adult with WS) who will be singing at the fundraiser.  I really enjoyed talking with her and her mom. It really did feel like one big family. I haven't been to a convention yet so this was the largest group of people with WS I have met. Rob and Jill had a delicious lunch and all the kids and siblings had fun. Aiden continues to plug along with all of his therapies. He has started to self feed alot more recently and today was chattering non stop. It was funny how much he had to say ( most of which no one could understand but who cares). We saw an endocrinologist last week. I want to make sure someone is following his growth or lack there of. The endo was not worried and said to come back in six months. I'm not in any kind of rush to start hormone shots daily so I was happy with the visit. The Dr. even made me laugh when he called Aiden " a giant amoungst the short stature kids". What he meant was that he does not consider a toddler to be of short stature unless he is under the 3rd percentile and our GIANT is in the 4th percentile! We love the little guy none the less. It's kind of nice still being able to carry him and snuggle with him the way we do. His small size has advantages. I get to have my baby alot longer than I remember my daughter being.

Who knew that two adorable little kids could turn into coughing oozing mucus machines??