Monday, August 29, 2011

My lady...

"Isabella, can you please put Stella's food up so that Isaac doesn't get it?"
"Why, certainly, my lady!"

Isabella's had an ongoing trend of calling me, "my lady". I just might start wearing a tiara--if only I felt that glamorous! The funny thing is, when we went to Columbus a couple weeks ago, my brother-in-law told me that it looks like I'm getting more sleep--haha! Thanks Jon, I'm glad the circles under my eyes are dissipating and I'm a bit more fun to be around!

I'm always hesitant to share Isaac's sleep success because inevitably, as soon as I do, he decides to scream for four hours. But, sleep has been better and there isn't nearly as much screaming. With our improved sleep situation, I finally agreed to go on a vacation. For months Walter's been asking when we are going to take a vacation and I've been stalling and dragging my feet, saying I just can't do it--I don't have the energy and it wouldn't be a fun vacation with Isaac anyway. But since his surgery, things have gotten better. Isaac has happier days and more peaceful nights, which is beneficial to all of us. Of course, we still play musical beds (and couches). For some reason, Walter ends up in Isabella's bed, I end up in Isaac's bed, and Isabella ends up in our bed...major imbalance there. Obviously Isaac does not sleep in a crib. I think he slept in the crib one time, for maybe an hour. He needs a super comfy double bed (thanks to my parents for letting us borrow it), a fluffly feather pillow, 800 count Egyptian Cotton sheets and singing doves...okay, maybe not the sheets (the Target brand is pretty nice) and the singing doves, who knows, that might help.

Yesterday I overheard Isabella say (several times), "Isaac, I just love you sooo much!" Despite the many times that she snatches a toy from his hand or hoards all of the toys in one corner of the dining room and screams when he comes near, I love that she cares about him and obviously, loves him. She's become his little cheerleader: yay! Isaac, you're standing! good job rolling over, Isaac! Mommy! can you believe it, he just rolled over!

Isabella went to the dentist last week. It was just for a cleaning. No cavities. I've never known anyone to get so excited about going to the dentist. We arrived about twenty-five minutes early for her appointment because she kept asking when we were going to leave and why it wasn't time for her appointment yet. So I thought, what the heck, we're ready, we'll just go sit in the waiting room and look at the fish. She was so brave and so excited during the whole cleaning. When we went out to the car she said, "Mommy, thank you so much for letting me go to the dentist!"

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Making a jewelry box with daddy.


Isaac really wanted the hammer, so Walter gave it to him and I quickly took it away.




In case you aren't sure what's going on with this outfit, she's a cowgirl...


I told Walter to get this next picture. Please note the cell phone and head band tucked in her skirt...just in case...

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Genesis 9:13

I have set my rainbow in the clouds, and it will be the sign of the covenant between me and the earth. 



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Isaac's goal for OT is to swallow yogurt or anything pureed without the pacifier. Trust me, he would much rather scream and hit his head until the food simply falls out of his mouth before performing such a challenging task such as, swallowing on his own. Randomly though, he ate four ounces of yogurt last week without the pacifier...hasn't happened again, but that's okay, our goal is only five bites. But I'm an overachiever, so I usually double our goals. He'll get there. After that we can try textured purees. At this point though, he still gags, screams, and chokes if anything is too thick. He is meeting over 90% of his calorie intake goal--yay! He didn't gain any weight, but he did grow in length--yay! At this point he's drinking about twenty ounces of whole milk with Carnation Instant Breakfast added for more calories and protein. Walter says that Isaac always smells like a milkshake--that's because pretty much what he drinks, is a milkshake. You'd think that would make him want to drink it.













Doing yard work in style...











"Mommy, mommy! Did you know I can climb up a bird feeder?"




69. puffy white clouds
70. kids sleeping in the car
71. the quiet after everyone goes to sleep

Sunday, August 21, 2011

progress...

This week has been so many things, but the best part has been Isaac. I don't normally say that because as you know, he's a very challenging child, but something about this week has made him extraordinarily entertaining, funny, and just fun to be around. He's been making me laugh more than ever and I've been trying to soak up every moment. On Thursday night he rolled over for the first time and this week he also lowered himself to sitting all on his own! So what if it took sixteen months! Our physical therapy goals: rolling, pulling to stand, sit from stand, rocking on hands and knees, standing for more than three minutes. He's very close to pulling up and has done lots of rocking on his hands and knees. His ability to scoot though, man, it's pretty amazing how fast he can get around. He's even started dragging his music table and the bouncy seat around the room...it's pretty funny. His latest game is what I call, scooter hockey. As I was folding laundry I looked down to see why he was laughing so hard and saw that he was using a marker (with the cap on) and hitting a container of mints across the floor and then scooting really fast to go get it and hit it again. This week he signed, all done and please. He seems to have developed quite the sense of humor this past week--Walter said he walked into the living room yesterday and Isaac was wearing my glasses.

As I've been enjoying the progress that Isaac has made this week, I've also been processing all of this new information from genetics. Monday was hard because it was first day that I had a lot of down time and that also meant a lot of time to think. Which meant a lot of crying and a day of being very grumpy.

We do feel like Isaac will defy the odds and obviously, this week of happiness has been very encouraging. I felt much more hopeful after a friend stopped over and explained the world of special needs and early intervention and IEPs. You've probably heard of Help Me Grow, it's an early intervention service for developmental delays that our tax dollars pay for. We've been in the process of getting early intervention services on board for Isaac for several months and finally it looks like things are picking up. This will be in addition to his regular OT, PT and SLT.

It turns out a Geneticist who has spent time researching and doing clinical studies on 9p deletion, works in Cleveland. I was able to get in touch with her and we are planning to meet with after Isaac's full evaluation with the Geneticist at the Clinic. It is a blessing to have so many wonderful resources so close.

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Did I tell you, we moved?

And then got lost in our new house so we decided to move back to our other house. Turns out three bedrooms suits us much better than, I don't know, one hundred.



A couple weeks ago we went to the zoo...first time for Isaac! He loved it. Isabella liked it too but her trips to the zoo are kind of like my shopping trips...buzz through, see what you want to see and move on...





I couldn't resist the carousel--it was so much fun! I figured for Isaac it could go one of two ways: freaking out and screaming or actually enjoying it.

Babe, please try to focus on my face next time! Thanks!



he enjoyed it...







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Look out, Stella! You're about to get measured!

I did a double-take when I saw the next picture. Isabella looks so much like me...it's weird. Isabella and Maya are probably talking smack about who's best at ballet...



We've only made it to story-time a handful of times since Isaac was born. Hopefully this year we'll start going on a regular basis again because Isaac really enjoyed it.

Michael had his "Man Night" and Walter was at church, so Sarah and I took the girls out for ice-cream and trip to the park.

"Isabella, have you ever had strawberry ice-cream?"
"No"
"I'm really proud of you for trying to a new flavor of ice-cream!"





Last week I was practicing with a borrowed, 105mm lens, unfortunately, Isaac loves me so much that I can't move too far away from him, so these are really close, close-ups...


Yes, he really is this pale...


Only cool people have hair like this...




Stella really wanted me to take her picture, so she smiled...

One Thousand Gifts

60. Isaac's silly laugh
61. Isabella's face after applying her own lip gloss
62. Dancing with Isabella
63. Isaac's face while I'm dancing with Isabella
64. Mary Jo and Abby at the Feeding Clinic
65. Maureen the Genetic Counselor who was sensitive to our needs and emotions and who worked late into the night before our first meeting
66. Friends who listen to me cry and tell me that everything will be okay
67. Watching the trees in our woods sway back and forth
68. My mom, for taking Isaac so that I could focus on Sarah and the birth of her amazing, beautiful, baby boy...more to come on that later!