Showing posts with label albinism. Show all posts
Showing posts with label albinism. Show all posts

Friday, June 20, 2008

AH, Summertime!

Our little boy is just growing up so FAST!!! Here we are getting ready to go swimming at the YMCA. And for my fellow friends with children with albinism, I am finally brave enough (with the right hat, glasses and buckets of sunscreen) to tackle outdoor pools.
His vocabulary is expanding everyday. It started with "Uh Oh, go, dink for drink, ju for juice, uh for up" but now he is just getting to be Mister jabber jaws. He says, "woof for dog, wa for water, rah for light, soup, rie for rice, cheese, peas for please" and on and on. Yesterday, was particularly victorious because he learned how to say and sign for "eat" and has been really investigating the power of getting what he wants when he uses his words. He also learned how to say "hep for help" and that has been quite the peacemaker between us.
Naps are still a real struggle. He just can't settle it down around me. For Grandmama and daddy though, he will pretty much just grab his blanket and go to sleep. Perhaps it is b/c I am his main playmate as well as the disciplinarian...and also because I do not let him cuddle with me on his way into sleep (we cuddle beforehand and afterward, and I stay in the room with him, but I am trying to teach him to fall asleep by himself in his good bed. We usually compromise by holding hands.)
Today, is ZooVenture day with the Bell Center. I am asked to bring him to the zoo where the therapist staff and many volunteers from area law firms will take our children around the zoo from 9 to 12 while the mommies get some much needed time alone and some pampering. We will be treated to a fabulous brunch. I am trying not to get too excited as most of me knows that Noodle is probably not going to buy it. The whole concept would terrify me except that I have tremendous confidence in his therapists and I KNOW they will watch Beck and advocate for him at all times. Yesterday, we went to the Children's Library watch a presentation on bees. I sat him down next to one of his classmates (the prettiest one, of course, Beck) and his OT nestled right on in and started engaging him while the mommies slipped out for our meeting. She said he cried softly for about 5 minutes and then pulled it together with lots of singing....until....until the speaker said the word "mommy" and our little guy came unglued. His therapist had to take him out of the auditorium. So you see, I expect to get my little man handed back to me about 20 minutes after I leave (that being the length of time I imagine his team will give him to pull it together). We keep trying though and it IS getting better.

Sunday, April 13, 2008

Rub-a-dub-dub, There's Noodles in my tub!















Punk rocker or Folk Singer? By the time Beck is old enough...they will be practically the same thing. Philip and I really suspect it will go more the punk rocker route. Beck has the gift of aggravation. Why just this morning, he toddled himself over to the his chalkboard, looked at Philip and I and just started clawing those sweet baby fingernails right down it. Hilarity!!! He's such a quick study, that it took mere seconds of experimentation before he found the magic sound.

Friday, April 4, 2008

Spring Medley

I dedicate this picture to my cousin, Susie, who was fascinated by Beck's busy and able feet. She coined him "pedextrous!" I had the sudden urge to paint my nails bright pink the other day (I'm sure it has NOTHING to do with the fact that my clothes feel and look like sausage casing and that my forehead is losing the battle of the hormones). Ever curious, Beck was enthralled by the whole thing but he kept trying to lick the nailpolish off as though it were yummy candy....so I painted one teeny tiny toenail which he waved around all day long.


Grandmama took a folk art weaving class (on an honest to goodness loom even). I think everyone who knows her is just thrilled beyond words that she finally feels good enough to do this. Anyway,, in one short weekend, she weaved that gorgeous scarf there. Of course, Philip had to jump in to give us this little piece of Rasta Noodle.








Noodle sure does love his bedtime stories!!! This is one of the first pictures that deomonstrate his low vision. He doesn't let it get him down! He just gets right on in to the middle of the action.


Tuesday, April 1, 2008

Noodle...Adventurer...Wild Man...Lovebug

Spring is here and it's time to conquer THE SLIDE!!! (Just don't ask me to get on one of those scary swings...just stop trying, MOM PLEASE!!!
Beck's not truly happy in the confines of his tiny home anymore. He has better and more important business to attend to OUTSIDE.



Toddler stairs....a snap!





















Oh yeah...I'm the man!!!



























Oh, you want ME to push myself over?? "Scoot, Scoot, Scoot!!, you say?" Let me think about it a minute or five.












I'm still thinking.










Now, I'm ready...WHEEEEEEEEE!!!!!!!!!

Monday, March 24, 2008

Thank You Easter Bunny...


Beck's very first PEEP, ever!!!






















OK!!! That was artificially yummy, what else ya got?









It's the Saturday before Easter and we are at Grandmama's at her church's Easter Egg hunt! This is my Bruce Lee ensemble that was given to me from Caleb (pictured below). Almost all of my snazzy threads come from either Caleb, Jack, Sam, or Jonathon.





This slide business is a relatively new thing. If he can restrain himself from taking off his shoes for a few seconds...he can actually have some fun.



















Nope...see....the temptation just gets the best of me.











This is Caleb and his grandmommy. They have been VERY kind to us!







What I PREFER is to have Grandmama on one side doting on me...and mommy on the other side doting on me....something is missing here. Actually, what Beck is thinking at this moment is, "Can I take these particular shoes off while standing?"








Mmmm...buffet table with fruit and cupcakes!!!
















It's Easter Morning and the Easter Bunny came! In fact, the silly rabbit brought Beck TWO baskets!!! (One is from Grandmama and one is from Brandy G. who gave us this beautiful embroidered basket when we first learned that Beck was our son about a year ago. How did she know that the perfect basket would take some sting out of not being with him that Easter?






My goofy child was obsessed with Parson's (one of his grandparents doggies) bed. The Easter Bunny had hid an egg on it and Beck thought that was just exactly right...








So ALL eggs belong there!







The eggs were a big hit. I will have to add in pictures of the coconut Bunny cake that Grandmama made for Beck...as soon as Grandpapa sends me the pictures...




Thursday, March 20, 2008

Some of the more difficult issues...

Today, Beck is being evaluated by a team of therapists (speech, occupational therapy, physical therapy, and so on) at the Bell Center. We are VERY excited about this! The Bell Center is a fantastic place that really does amazing things for children who have special needs. It is a non-profit Early Intervention Facility. You can learn more about them here http://thebellcenter.org/

So the hard part comes in when you ask the question, "Why does Beck need these services?" The reason is because he is quite developmentally delayed. He was diagnosed as "severely delayed" when we brought him home from China. It is the CAUSE and the degree of the delay that is a mystery. I would like to take this opportunity to point out that since he has been home, Beck has made tremendous progress in all areas. It may seem like I am focusing on the negative here, but the truth is that I am in utter awe at this amazing little boy. He has overcome so much in his short life...his resiliency is remarkable. We are terribly proud of our Noodle!

It is our responsibilty and our delight to try to get the most help for him that we can...heck, we owe him that much. I think that my best theory as to "why?" comes in the form of a recipe...a pinch of this and a dash of that. I don't think that we will ever get the answer to the riddle so that is the way I deal with the unknowns. The International Adoption Clinic stated bluntly that they have never seen such severe delays in a child who has been in foster care. They were shocked to learn that we KNOW Beck came from a loving foster home and that we communicate with them regularly. The thing is that his foster family is from another culture...maybe their perception of thin is different than ours....maybe they don't have any expectations of special needs children's futures and don't push them...maybe they don't stimulate and play with the kids as much because they have so many or because they will have to let them go. The point is, I don't know...and I cannot blame his foster family even if that would be the easy way out. Beck's life is full of challenges and he has already built a wonderful bridge between here and China (not bad for not even being 2). So he came to us with big obstacles to overcome...so what...he can do it...I'm certain of it. Behind the scribbles "developmentally delayed" and "albinism" on his medical record is an incredibly intelligent, loving, creative, quirky, and pleasant little boy. There is not a thing in the world wrong with this child!

I was going to write a little about the other "hard" issue...sleep. I have rambled enough, and will tackle it in a separate post...it deserves a post all to itself anyway. In the meantime, here is Noodle mastering the whole standing thing...piece of cake!






Can I get a drumroll, please?







See, nothing to it!



































Monday, February 4, 2008

It had to be you TWO???!!!!

So here we are...home just a couple of weeks with our amazing little guy and I'm here to tell ya, WE'RE TIRED!!! Throw some serious jetlag in with a jetlagged, freaked-out insecure baby and what you get is a recipe for exhaustion. Ok, I'm a little hard on Beck here, but we are also first-time parents and have NO idea what we are doing and we don't fully know this little guy or his many quirks just yet.

At one point, weeks after being home, Philip took Beck and for just a second...I could hop on the internet. Now it's been almost a month and I didn't realize how habitual internet surfing is (seriously watch yourself sometime). So, I clicked on a particular website that is a collaboration of many, Many adoption agencies. For now, I'm not going to post the site. Anyway, I used to go there daily and I guess in the back of my mind, I was hoping there would be a really great article on sleep issues (there is, but I didn't find it that day). At the top left of the page, the website always puts a random picture of a waiting child. This particular day, I looked at the picture and thought, "Wow, I KNOW that look...that is a little Chinese baby with albinism!" Well since my main studies now involve the super-saturated cuteness of Chinese babies with albinism, I just HAD to look.






Here's the problem with looking...it's the same as knowing. I called Phiilip in to see this adorable little baby girl and he non-chalantly said, "Well, we need to go get her!" WHAT?!! I didn't think it was POSSIBLE to adopt again so soon from China, but we checked into it and the agency (Madison Adoption Associates) who was handling her file said we were ok.


Here we go AGAIN!!! So I just had to get more pictures of our future daughter.


Introducing: Bo Rao Shan at 5 months of age. (Bo is the surname given by her orphanage). We will name her, Ren Shan.















Doesn't she look like an adorable little heffalump all swaddled up like that?








And we got updated pictures of her at 8 months of age!
























Welllllll....noodles and angelcake go well together, right?