A life less lived

There was a time not so long ago when New Year's Eve was my favorite holiday. My parents always had plans on New Years Eve. As a young child I remember spending the night at my grandparents home so my parents could go out. I started celebrating with my friends at sixteen and never looked back. Christmas was ok, hannuaka too, halloween was only good if there was a party and even then it lost its luster when I became too old to trick or treat. Never cared much for valentine's day either. New Years Eve was the night I looked forward to all year. Good friends, good food, lots of drinks and bar hopping in Manhattan. Music was always involved, what band was playing where. Fast forward to parent hood. My last New Years out was five years ago. I've been OK with it up until this year. The kids are both sick. I mean SICK. Coughing, fever,dripping nose, pink eye, (with all the glorious eye boogies) vomit and let us not forget to mention the perforated bleeding ear, ear infection that decided to join in on the fun today. My poor man always has to up the anti. At the doctors office his ear started bleeding. Needless to say I held it together in the office but I am seriously freaked out. They are on all types of medication and now I worry about this being a reoccurring thing with Aiden. One more problem to add to the list all before he is even two and a half years old. So my day today after the doctor was wiping noses, cleaning eye boogies and trying to force fluids into both the ozzing mucus factories. I forgot it was New Years' Eve until I was trying to figure out what to do about dinner! Now the kids are in bed (coughing) my plans for tonight are to medicate the kiddies in another two hours and probably sleep on the couch. They had me up so many times last night it almost doesn't pay to go upstairs to bed.  I really need a vacation! Maybe when this all blows over my husband will take me away somewhere for a weekend.( if you are reading this Mike hint..hint..Mohegan Sun) My birthday is coming up and that would make a great gift.

I can't believe how long it's been since I've blogged. I always have time to peek in on my WS friends blogs but never get around to updating mine. I always have time for others and rarely take the time for myself. I was supposed to go out tonight for some grown up time with a girlfriend but she wasn't feeling well. I have been looking forward to it for weeks. So here I am 8pm on a Saturday night, at home about to put my pajamas on! I need a life seriously.

Stephanie and Sportaceus from Lazy Town

The Heart of a Child

Aiden and I just returned from our Mecca to Kentucky. We met with Dr. Mervis and Dr. Morris. It was our first time meeting Dr. Morris. She was extremely thorough and gave us some good advice. She is concerned with his size (small even for a WS kid) and his low tone. Dr. Mervis suggested more OT to work on the low tone and fine motor issues. We even got to meet a few other kids. There was Hannah (teenager) and a small fry like Aiden named Ella.  The other kids I saw in passing. Ella and Aiden shared a snack and Aiden tried to steal her crayons. Sorry I forgot her parents names but it was nice meeting you. We are so busy there for two days that there wasn't much time to talk with you .  The traveling was the hardest part. One hour drive to airport ,two hour flight, taxi to motel and shuttle van to the university. I bought a great airplane seat belt harness for kids. It was a life safer , two minutes into the flight and Aiden wanted to "go up". The harness kept him seated and then it was just up to me to keep him entertained. I went through every toy I pack, every snack and I even stooped to barf bag puppets. We survived the flights with minimal crankiness.

Happy Birthday to my special little boy! Tomorrow is the big day. It will be a family party at home . I'm so done with the hassle and expense of party places. Can't wait for him to open his new toys. Typical boy loves cars. Autumn took her allowance money and went out with Dad today to buy her brother a birthday present. I'm so proud of her.  

Aiden has started to repeat what we ask him to say recently. Just this weekend we added

We are approaching two very quickly. Just three weeks away. Recent days are mostly good. Thursday I had an appointment to take Aiden's birthday pictures. I was giving him a bath and found myself taking a good hard look at his scar. It goes from right under his neck to just above his belly button. It has faded in color but curves to the right. There are thicker spots and raised spots. It just struck me as strange that it is just part of Aiden now and I don't notice it much any more. I spent the better half of that morning reliving the surgery nightmare. Days and nights in the hospital and all that we went through. Reaching two is such a victory.  He had fun at the photo studio and came home with a great shot of him.

My son is so tiny I am taking IN last years pants! Seriously. I pulled out last years pants because it has been getting chilly in the morning. Not only did I have to take the waist in from last year but for some reason the length is long too. Instead of taking down the hem I might have to cuff them. Is he shrinking?  Autumn was wearing 3t's at his age. We skipped all the size 2's all together for her. The good news is I don't have to buy any more winter clothing for him.

Want to make a quick entry but my laptop is about to die.  Autumn loved her teacher. She was excited to go back the next day. Hooray. What a relief. I still miss her being here. The house is soooo quiet without her. 

With one day left of summer vacation my brain keeps reviewing the days gone by and reeling over Autumn starting kindergarten. I was up all last night. Where have the past five years gone? I remember so clearly watching her crawl, taking her out for walks in her stroller and dropping her off at my Mom's while I went off to work. I always packed all her bottles and meals to take to grandma's house. I remember crying all the way to work for weeks when I had to go back full time. Now I feel like the next twenty years she will be in school . Kind of going through separation anxiety all over again. She is excited and a bit nervous. I know she will do great. I look back on the past two years with everything Aiden has been through and I hope I have met all of Autumn's needs as well. Poor kid is still attention starved and jealous of Aiden and his therapists. As much as I know I have given her 100% I guess there is always that mother's guilt having a special needs baby. All the stays at the hospital and overnight trips with him to specialists. Now she will be in school all day. On to the next step of the motherhood journey. Sad today but I'm sure by next week I'll have adjusted.

I can't believe the summer is half over. I will miss the time I get to spend with Autumn. starting school full time in September is a big deal for both of us. On the other hand getting her back into a routine will be very welcomed. I have tried every trick in the book and three out of four therapy sessions Aiden has per week she has been acting out. I can't wait to have that stress resolved for both of us. 

I can't believe it has been so long since I blogged. I think about it every night but never get around to it. So much has happened in such a short period of time . We had our dermatology appointment and he said it is just a benign birthmark and we should not worry about it. The nephrology appointment showed his kidney is actually getting better on it's own (yipee) the blood work was a little off but surprisingly it was not his calcium levels. I have to email Dr. Morris some questions. Our pedia. didn't answer my questions and just said we will retest next time(6 months from now) we come in. We had a great visit with our cousins. A house full of kids was a challenge but we survived. Five kids under the age of five for four days over the holiday weekend! Had fun at the petting zoo, kids museum, and beach.

How did he manage to climb up on the couch? Still don't know! Dermatologist appointment went well. Nothing to follow up with. Horray. We have been sooooo busy and he has been so incredibly good. Very little complaining about all the running around and not sticking to our schedules. My little munchkin is starting to look more like a little boy and less like a baby.

Happy Birthday Autumn. I can't believe you are five already.

Took Autumn for her birthday pictures. She is almost five!. Where has the time gone. As a bonus I got this adorable picture of the two of them together.(See photo at the top) Aiden looking like a farmer boy. He was so good during the photo session. He also amazed me at the Father's Day brunch. Made it through 90 % of the meal before he starting getting fussy. This was a huge improvement over most restaurant trips. I usually dread eating out because it is more stressful on me and forget about enjoying my meal. Hopefully as he gets older and stronger we will keep moving in this direction. He surprised me at the last visit to the pediatric doctor as well. He didn't cry! Maybe because big sis got seen first or because he is just growing and changing a bit. He is giving kisses out upon request now. Very cute. He loves when two people are near him and he gets to bop his head back and forth between us and alternate kissing each of us. A game to him but it melts my heart. He is such a momma's boy.

I've stopped worrying about the future. Really can focus on the here and now. Even still there are good days and bad. Only one year since we found about about Williams Syndrome. It still seems like a dream. All that we went through with our baby boy. The scars from two surgeries serve as a constant reminder of how far we have come. He is such a joy. I wait for the day he calls me Mom and means me. Waiting for him to run around the yard. Still not sure why it has to be this way for our family yet I feel blessed to have such wonderful kids. It's just hard some days.

Can it get any hotter here? The kiddies are loving the sprinkler and kiddie pool. Aiden would sit in the pool and splash all day if I let him. He cries any time I try to remove him from the pool or the tub. He took several steps during PT today and started clapping for himself. So close to walking, can't wait. His favorite word is open and uses it all day for anything he comes across. Autumn's officially home on summer vacation. First day home and as expected therapy was rough for her. She wanted to play and be the center of attention. Tried talking with her reasoning with a four year old! Let her play some but she started getting carried away. Grandma suggested computer time during therapy . I'm going to try it tomorrow. I have three months with four days a week therapy ahead and have to nip the issue in the bud now. My poor girlie . 

The beach is on our to do list. Splashing in the backyard pool, enjoying ices on the deck. Sleeping late and taking swim lessons. I could stop there and it sounds like all the plans families have for their summer break. What is not on their mind is the nephrology appointment, kidney ultrasound, blood test, urine test and oh just for added fun dermatology appointment. Six month IEP meeting and adding a speech therapist. I was waiting for school to end so I could more easily schedule all his doctor follow ups. I really don't know what I am going to do to keep Autumn happy during all the therapy and doctor appointments. I scheduled most sessions while she was at school but now she is off the whole summer. I really need to have a game plan. I have tried rewards, playdates, bribes, tv time and  she always seems to misbehave during therapy. She is too young to understand why these people are here to "play " with her brother and not her. We let her play with some of the toys  but she still wants all the attention. I probably need to start a reward chart. Good behavior during therapy and she gets a star etc.... 

Well the kiddies are recovering but I ( of course) have gotten the cold from them. Fever and nasty cough. So much to do no rest for Mom. Summer is almost here. While it means the end of preschool and dance class we will be going to swim class and adding a new therapist to the mix. In the process of getting a speech therapist for Aiden. His ISP is in July so hopefully the paperwork and evaluation will happen before then. Tomorrow is Autumn's preschool graduation. I can't believe the year is over and she is almost in "big school" 

Both kiddies home with fevers today. No sleep last night because Autumn was sick. Today Aiden got sick as well. They are taking turns waking and calling for Mom. No rest for the weary.

Our friday therapy session was cancelled. The Special Educator asked if we could reschedule because she was going away for the holiday weekend. I feel like I won  a trip to Disney. :-)

Very happy about our cardio visit.The visit took four hours, it was pouring out, there was construction and chaos at the hospital and it took us one and a half hours to get home in the monsoon but I am still thrilled. Aiden's report was great. Doing as well as to be expected. He cried for almost forty five minutes but shockingly did not cry during the echo. There was a new echo tech this time. She was gentle and calm. He responded so well to her and laid in my lap watching einstein videos. I was so happy I could burst. During the doctor consult he started to cry again but that went relatively fast. Don't have to go back for another six months.

One year ago, April 18th to be exact we were in a hospital in New York. Our baby only seven months old at the time was in the operating room having open heart surgery to repair the pulmonary stenosis and valve issues. The cath they tried two days earlier was unsuccessful. It was a total nightmare, out of body experience. The very next day while our son was still sedated and in critical condition we got a call bedside to inform us he has Williams Syndrome. We spent twelve days in the hospital and finally was able to go home. Home to a new life with a child that has a rare genetic condition. It's been a tough and rewarding year. Challenging my strength and will as a mother and a woman. We go back to the hospital tomorrow for our one year follow up and echo. I dread going back but I am hopeful that everything will be o.k.

Reflections of a good day. Had some alone time with Aiden today. Dad took Autumn to Chez Chuckie Cheese's. We popped bubbles outside on the deck and then I gave him a razzberry under his neck that started a ten minute giggle fest. With him pointing to his neck and squeeling when I got close enough to do it again. How cute.

Glad to have a "family" of WS parents that understand what it is like to have therapists parading through your home everyday. They understand how as a parent your heart stops when the echo machine is fired during the cardio visit. What it feels like to have to inform your family and friends that your child has a rare genetic disorder. How it can test even the best marriage and add another layer of guilt to parenting the sibling of a special needs kid. How we have to fly to Kentucky or Nevada with our kids to get the best medical care! 

I know it will happen one day. One day I will forget how we waited and watched everyday for those few precious steps. How we applauded when he said A word. I can't wait for the day he says Mom and means me or runs up to Dad as he comes home from work. I watch all the babies around me ( friends, neighbors, families at the preschool and library) growing, walking, talking. I try not to let it bother me. It's hard when the kids half his age are walking and dancing while he sits in his stoller.  I know it will happen. I have been mentally preparing for the next cardio visit. It's usually a whole day at the hospital. He cries the whole time, the echo tech gets inpatient with us and doesn't help the situation. Not to mention the fear that they might find another problem. It has been one year since his open heart surgery and I still feel shelled shocked! To end on a positive note his kisses make everything o.k. My girlie was super great today. We enjoyed the warm weather and made it through the day without crying or whining.

Feeling a little sad today. Might be the dark rainy day. Aiden took a few steps today during his physical therapy. Wow! so cool.  At the same time it makes me sad how hard he has to work and struggle for those few steps. He wants to go, his body is just not strong enough yet. He spent almost an hour standing(of course leaning) against the sofa happily drinking his milk from a sippy cup. No more bottles! Yeah! Autumn had a tough day today. I'm hoping she was just tired.

So wouldn't it figure that Aiden's first steps take place while I am away and grandma and papa are watching him!! Three steps without holding on. He is babbling up a storm since this weekend. Really funny to hear his "stories" while he is eating his meals or when Dad comes home from work