Wednesday, July 29, 2009

Welcome to Holland

A friend of mine with a special needs child shared this poem with me the other day. Its such a great analogy of the life we are living. While some days it is easy to get caught up in "this is really hard, its not supposed to be like this", or to shake a painful feeling of seeing a typical child develop quickly without work... But I know that if we spend too much time there, we will never appreciate the beauty of what we have been given, the amazing people we've met, and the privilege of getting to experience life differently with this amazing little guy. Everything I look at in life has been re-aligned because of him...for the better. When he walks one day, I think we should celebrate by going to Holland.
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WELCOME TO HOLLAND
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
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When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
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After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
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"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
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But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
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So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
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It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
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But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
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And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
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But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Tuesday, July 28, 2009

All Good Things

Everything is good this week. My last update said I would post some more pictures, but I haven't had a chance to organize them yet. Lucas and I ended up flying to Ohio the day after we went to New York. I had a meeting come up in Indianapolis on that Monday (which is just a couple hours from my hometown), so I decided to take advantage of the trip and give my family some time with him. So Bran and I got back from NY at noon on Saturday, and Lucas and I were on plane at 4 pm to Ohio! We had a family event Saturday night, then got to hang out with my brother & sister in law, and visit with one of my best friend's Jodi and her family on Sunday, and then Mom was thrilled to be off work and babysit while I went to my meeting Monday. We flew back to DC on Tuesday...whew, very quick and busy trip, but well worth it!
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The timing was good for the trip home because my Mom & Blain had a get-together with some of my Mom's side of the family that I haven't seen in a long time, and most had never met Lucas. He was all smiles and the entertainer for all of them. For those of you that have been following our blog for awhile, you may remember me writing about my first flight with Lucas last year to see my Uncle Roger, who passed away a few weeks after our visit. I know it meant a lot to me to be able to spend that time with him and I treasure the pictures from that day, but talking with my Aunt last weekend reconfirmed that it was worth the trip when she told me how much it meant to Roger to get to see and hold Lucas. She said he knew that he would never be able to experience any of his own grandchildren, and that "Lucas was like his grandchild." Makes me cry just thinking of that day, I'm glad that our little man could bring a smile to his face after being sick for so long. The last thing Roger said to him as we were leaving was, "Thanks for coming to see me, Lucas. The next time I see you, you'll be able to talk to me." I know that Roger is watching over him and I like to think of him smiling as Lucas squeals his adorable, "hiiiiiiieeee!"... and all the other babble that totally sounds like Lucas is having a conversation.
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Lucas did great on the flight, and said "hi" constantly to the people sitting around us (and never stopped saying, "ab-by, ab-by, ab-beeee!") Everyone thought it was cute for awhile, but I think they were getting annoyed about half way through. I finally had to turn him the opposite direction so he'd stop trying to get their attention! He is such a social boy! If you don't answer him, he will say "hi" fifty times until you do. I really need to get some videos of him talking... sometimes he draws out "haaaaeee" really long and it sounds like a cross between a having a southern draw and Will Ferrell's impersonation of Harry Caray. (If you are a Will Ferrell fan and have seen this skit on SNL, you know what I'm talking about and are probably chuckling right now).
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A couple of appointments since my last update... we saw our holistic pediatrician about his weight gain and she feels that he's right on track and is not worried, like the GI. According to her scale, he has gained since the last visit in May and he is still following the curve (not on the chart yet, but is maintaining his own curve). When I told her that GI was concerned that his weight was too low according his height/weight ratio, she said it is more important that he IS gaining along the curve. She has a better comparison, having done a weight check in May... and the GI's last weight to compare was in March. Here's something interesting... what the US considers "normal" weight on the body mass index, it is typically considered "overweight" in other countries. Our normal BMI is higher than most other countries. Go figure, and the US is one of the unhealthiest countries! We also took the plunge and eliminated the final part of dairy in his diet (Pediasure), and are no longer doing bottles. I'm a little nervous since the GI wanted us to increase Pediasure, but Lucas just doesn't want the bottle anymore. She feels since lately we can only get a few ounces of Pediasure in him/day anyway, we can replace what he was getting with fattening, but more healthy and natural alternatives (not something manufactured in a plastic bottle). I was also reluctant to stop the bottle because he's not entirely onto the sippy cup or straw yet (still just takes small sips), but she feels we should try eliminating it and is not concerned that he's not into drinking much. She said some kids just aren't big drinkers. She gave me some more advice on high fat foods that are very healthy, like chopping nuts and seeds and adding it to his food, and adding nut butters every chance we can. We're going to give it two weeks and check his weight at that time to see if he's doing ok with this latest change.
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Overall she was really excited about his progress since making the diet changes in May, she immediately commented on how strong he feels, and his alertness and level of interaction/play. Even the GI doctor said that inspite of the low weight gain, she was extremely impressed with his overall demeanor and how healthy he looks. We also got the bloodwork back from GI a day later, and all of his levels are right in line, ("excellent" was the word she used). I was sooooo relieved to get those results, and it made me a lot more confident in following the nutritional advice from our holistic pediatrician. Obviously we are doing something right if his blood levels are excellent... and they took five vials, so I know they checked everything! So, we're going to stick with our Pediatrician's lead and stay on the healthy food track, rather than the GI's advice. I really feel like these new food choices are the key.
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We decided we are going to get a second opinion on his eyes, muscle surgery, and patching, since what the ophthamologist is recommending is contradicting what we and our vision teacher are seeing. I got a referral to a doctor at Johns Hopkins in Baltimore, and he's scheduled to go at the end of August.
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While I work on getting our other pictures organized, here's a few that we had taken last month for Bran for Father's Day by the same photographer that did the Cherry Blossom pictures (Stacey Vaeth). I wanted to get them posted before they get old! I don't like to post so many of me, but I think some of the shots she got with Lucas and I are so sweet. I think she's a great photographer!
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PS, Lucas can now sit up all by himself for about 5-7 minutes-- not propped, but while using his hands with a toy! And he's starting to use his left hand to stabilize sitting so he can use his right for playing. :-)
Kisses for Mommy
Happy Father's Day, Daddy!
My favorite picture - our little miracle standing on his own two feet!
This may not look like much, but up until about a month ago, he wouldn't stand or weight bear at all.
Say "cheese!"
Slapping Five
Little Ham... It wasn't hard to get smiles out of him!
More kisses

My friend Courtney & Lucas' girlfriend, Elle (also a 25 weeker)

Monday, July 13, 2009

Busy, Busy

Sorry it has been so long, we've been super busy the past few weeks with work, business trips, and vacation, and we're doing a major yard rennovation in our "free" time. We spent a week (of the 4th of July) with the kids and my whole family at Norris Lake, TN. Like last year, my Dad & Rose rented a house for all of us as (my four siblings and our families) as our Christmas gift. It was great all being together, especially since we live pretty spread out. At one point, we had 23 of us in the house! It was a week of no Internet access or phone service where we were on the lake... actually kind of nice for a couple of people that can't get away from a Blackberry! We were forced to turn everything off. We spent a week full of sun, water, boating, cocktails, and lots of laughs...there's never a dull moment when my brothers get together, then add Bran into the mix (he and Matt are trouble when they get together)!

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This picture above was taken on the drive back from TN... I looked back and found them like this. So sweet. Abby is such a great helper with Lucas and keeping him entertained! Nicholas wanted to ride next to him on the way down, but quickly realized how much work it is sitting next to Lucas on a long trip... when he wants a snack, wants to play, or when he chucks his toys across the back seat. He was pretty willing to let Abby take that seat on the way back! Ha.
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Not much to report... that's a good thing, right? All is good and Lucas is still talking like crazy. It was great seeing him around all the family, if anyone passed him in the room or came within ten feet of him, it was "hi"... "hi"... "hi." If you don't acknowledge him right away, he'll keep saying it until you say it back. This week, he's moved on to "Heeeeyyy". Sometimes it comes out in a sweet little groovy tone, sounding a little like the Fonz. Warms my heart to be greeted this way in the morning. He's experimenting with a lot of new sounds too, lots of "o's", "eee's", and "bee". Abby was so excited she started screaming when she heard him put together "Ab-by" for the first time this past weekend. I am really hoping I can get some videos up soon showing his progress.

Still not sitting up, but I'm trying being patient and not get caught up in what Marcy told us a few weeks ago. He continues to get stronger though, I know its right around the corner. This weekend our neighbor was over with her 7 month old, who is sitting up well... I overheard Abby and Anna say, "he can sit up and he's seven months old? Lucas can't do that yet." Broke my heart to hear them say it, but honestly, the feeling was quickly retracted and replaced with pride when I heard Abby say, "but we're working on that with him. He's almost there." (She said, "we" are working on that with him.) I've said it before, they have such a sweet bond and ownership of him. They are genuinely excited to help him learn and do new things.

We had a GI appointment last week which wasn't great, he's not gaining enough weight for her satisfaction, his weight to height ratio changed and he's now out of an acceptable ratio (he grew another inch and didn't gain anything the past few months). Ehhh, SO hard to eat healthy and gain weight!! All that dairy we removed contains the fat! We are eating other foods, but its not easy. They drew a bunch of blood and want to check various levels, but we don't have the results yet. They took five vials, can you believe that? I was thinking the whole time, are you sure that is safe to take so much out of a little guy? That's A LOT! I'm pretty bad with needles and blood, so I had to turn away the whole time. Hopefully they don't find anything alarming, it will be good to have peace of mind in knowing his levels are ok. So, we're back doing night feedings, she increased his dose of periactin for increased appetite (still 2 weeks on/off), he's back on Prevacid, and I have to start keeping a food log. She wants us to meet with the Children's nutritionist, and we plan to visit our holistic pediatrician again for new ideas. Personally, I think we're fine, he's always pulled out of these low weight gain lulls, and he was thrown so off of his schedule during vacation, I know he wasn't eating well. His eating this week already seems better.

That's all for now! Here's a few pictures, but check back later this week for more. Bran and I are off to New York City again this weekend... but without Lucas this time! Not that we won't miss him for a night, but it will be a lot of fun for just us to get away. We're heading up with a few couples to celebrate a friend's birthday, see a broadway show, and take in the nightlife. Yeah!

Trying our first lollipop from Anna this past weekend... he loved it!
First time swimming in the lake with Grandpa Don
Always taking care of him
Hanging out with Grandpa

The whole gang
(the sun was right in everyone's eyes!)

Practicing kisses with Gran last weekend... how sweet is this picture?