Family day...well, we tried anyway!

After spending a long weekend in Chicago without my husband and Aiden, I decided that today would be a great day for all of us to do something fun as a family. We had a good breakfast, managed to get a morning nap (even Ricky and I), then got ready for our fun day. We decided on a picnic at Waterfront Park where Ethan could run around in the fountains and play at the park.

I packed the bag with Ethan's towel, extra clothes and snacks and we loaded the kids into the car. Ricky and I opted for Subway and brought a cooler with softdrinks. By the time we headed out, the perfectly sunny sky started to turn gray. We checked the local weather-by-phone and were disappointed to hear that there was a 60% chance of storms in the "early afternoon". I looked at the clock. 11:45. Great.

We hurried to Subway and decided to eat our food in the car so it would give Ethan more time to play at the park before any rain. We arrived downtown, found a great parking spot and started to unload. Strollers, check. Little boy ready to play in the water, check. Towel and dry clothes for said little boy...nowhere to be found. It remained by the door at home. Boo.

So plan B or should I say, now, plan C. Let him play in the water and use the blanket we brought (for the picnic we were going to have) to dry him off. Got the kids in their strollers and headed to the water play area. Just as we got Ethan out of the stroller and interested in the spouting water fountain - rain. It wouldn't have been a big deal, but poor little Aiden in his stroller...Ricky went to get the car. So now that Ethan was soaked and we didn't have time to get him dried off, we had to get back in the car and head home.

Not quite the family day we had in mind. However, it was still a good time and got us out of the house for a few hours. Plus, we got a few cute pics, which always makes it worth it!

Totally Amazed

Watching my children tonight, I must say that I have been reminded how wonderful life is. Ricky and I just marvel at the many things that Ethan and Aiden start to do for the first time. Ethan makes us laugh in so may ways - his tenderness with Aiden as he runs (or should I say waddles) up to give him a hug and then swats at his head as if he is a toy he wishes to play with. Or the way he spins in circles to invoke our rendition of "Ring Around the Rosie". I cannot believe how much he has grown in what feels like a nano-second.

And Aiden has started to smile a knowing smile. The kind that when I get in front of him as he's staring at the blinking lights of his toy, he seems to notice me and thinks "hey, that's that lady I kind of like". My heart melts.

I'm getting ready to leave Aiden for a few nights (the first time I will be away from him for more than one night) and I cannot help but already feel upset. I won't nuzzle him one, two or (sometimes on those particularly annoying nights) three times at night. Instead I will awake to a plastic pump - which I wouldn't count as very enjoyable at 4am. I'll try to enjoy my "time away from the baby", but I know that I will more than likely miss him even after my newfound freedom allows me to have a few margaritas with the fam.

And I must say - I'm continuing to learn that God works in mysterious ways. I've been fortunate enough to be connected with some wonderful people in the past few days that have both inspired me and provoked me to think of my life differently.

Okay - so I've blogged twice in one day. I'm officially addicted. Stay tuned, apparantly I've got a lot to say.

Confessions from a first-time blogger

• I just celebrated my 3 year anniversary with my husband.
• We have 2 beautiful boys - ages 14 months and 3 months.
• We have a cat - Baxter - also a male.
• This means I'm the only estrogen in a house full of testosterone...(I actually just finished the book House of Testosterone - a must read for moms of all boys)

Back from Dallas

We're back from Dallas and I'm happy to report that we are thoroughly pleased with our appointment with Dr. Fearon. He brought us into his office and immediately asked to hold Aiden while he examined him. This was a nice change from all the other doctors who checked him out while laying on the scratchy white paper on the examining table. It made me feel as if he was a genuine and gentle person, not just a doctor who was giving him a once over.

We spoke to him for almost 2 hours during which he told us the following information - both general and about Aiden:

Aiden's head shape is the least severe for a child with Apert syndromeBecause of this, he doesn't think Aiden will have any problems with ICP (intracranial pressure) in the near future, so no immediate cranial surgeries are needed

His hands appear to be Type III which is the most severe and typically the most difficult to separate, but he assures us that it can be done and done well

Should we choose to go with his team, he will do the first hand/foot surgeries to separate the digits at 9 months of age (that would be in November), then a 2nd at 12 months of age (February 2009). He will then have all 10 fingers and 10 toes. His fingers would be functional - he will be able to pinch things, but not bend his fingers very well.The first cranial surgery would follow at 15 months (May 2009)

Aiden will then need midface surgery using the RED (Rigid External Distraction) system somewhere between the ages of 4 and 7. This will be determined by his breathing capabilities and emotional well being (sometimes if kids begin to get teased severely, they recommend going forward with this process sooner).

At around 10 years old, Dr. Fearon would put "bends" in Aiden's fingers which will allow him to bend them better and will give them a more natural look when his hands are at rest.

Other surgeries may be needed down the road to straighten his big toe, remove any bony bumps on the bottom of his feet that is common in Aperts kids, straighten his fingers, or other plastic surgery to improve the appearance of his nose, eyes, etc.

It was a lot to digest, but the important thing is that when we left his office, we knew in our gut that this is where Aiden needed to be. The next steps will be to send Dr. Fearon pictures of Aiden and his head circumference in 3 months so that he can evaluate his head shape. We will then set a date for his first hand/foot surgeries.

Aiden continues to do well developmentally and also with his physical therapy. He is so far hitting all milestones for his age (even being 5.5 weeks premature) which is great news. We pray that he keeps progressing!

Kiddie Land

Hi! Today is Mommy and Daddy's anniversary. They've been married for 3 years! That's before I was here! Daddy brought mommy the prettiest flowers. I love flowers and sniffing them makes me laugh.
Aiden - or "Dee Dee" as I call him - is doing good. I still like to hug on him lots. He makes me smile all the time. Especially when I am in another room and I can hear him. I point and say "Dee Dee". I love my little brother. I can't wait until he is big like me so we can play together more.
I have lots of teeth now. I've got 4 molars, and 4 teeth on the top and bottom in the front. I LOVE to brush my teeth. Really, I just like to suck the yummy tasting gel of the toothbrush, but mommy says she'll take that if I'll do it. We sing the ABC's while she tries to scrub my teeth. I think I might go to the Dentist soon.
Mom and dad say I am a ball of energy - and Nana says I'm such a busy boy. I love exploring everything - and especially like to find all the things that mommy and daddy don't want me to have (like the expensive remote control and the phones...I've managed to set off the house alarm more than once! Sorry ADT.)
I am a very sweet boy, but I've recently learned how to have a meltdown. If I don't get my way I throw myself on the floor and flail my arms and legs while screaming. I glance up periodically to see mommy or daddy's reaction, and most of the time they look very mad (although one time I caught them laughing at me!) Hopefully I'll find a better way to negotiate getting what I want soon or else I think mom might go crazy!
I got to stay with Grandma and PawPaw when mommy and daddy took Dee Dee to Dallas, TX. I love playing with my cousins Kevin, Makenzie and Presley. We swing on the swingset and sometimes PawPaw takes us on tractor rides.I went to Kings Island with mommy, Aunt Lauren, Uncle Jeff and my cousins Lilly, Andy and Ben. For some reason, I didn't like any of the rides in Kiddie Land. I was too small for most of them, but even the ones I was big enough for I didn't want to ride. Maybe when I'm 2 I won't be as scared. It sure looked like Andy and Lilly had a good time!
Say some prayers for Dee Dee will you? Love, Ethan

A+ on the ABR

More good news...I took Aiden to Kosair Children's Hospital on Tuesday for his ABR diagnostic hearing evaluation to check for any hearing loss. It would tell us if he had any at all and if so, to what degree (10% loss, 50% loss, etc.) I was instructed to bring him awake and hungry to our 7am scheduled appt. time downtown. The test was to begin at 8am and would last about an hour, during which time Aiden would need to be asleep and not moving or making any sound as it would interfere with the testing. Ha! After sleeping from 10pm - 4:30am (his longest stretch during the night!) I did not think there would be any way he would stay asleep for a whole hour. Often times, they sedate babies for this test, but in Aiden's case he met the age requirement but because he was more than 4 weeks premature, he was not able to be sedated. If he didn't get through the test, they would have to keep trying to get as much done as possible in between me trying to calm him down, or bring us back for another try at a later date.

I crossed my fingers that he would be a good little patient and allow us to get this very important test completed as Ricky and I both wanted to know the results badly.
A nurse scrubbed his forehead and earlobes with a gritty lotion and applied small metal electrodes in two places on his head and on each earlobe. Two small tubes were then stuck into his ears and a "pre-test" was done to give them an idea if Aiden had any hearing at all. He passed the pre-test - a good sign.

Then, I fed him and the ABR was started...he slept like a baby in my arms the entire time! The audiologist couldn't believe how good he was and she was able to fly through the test - we were finished in 25 minutes! As the test was being done, the results were showing up almost immediately on her computer. Aiden's results were, according to the audiologist, "textbook results". Aiden not only has 0% hearing loss, he also has average size ear canals which is a good thing with a child with Apert Syndrome. We couldn't be more pleased!