It’s been such a long time!

**Small announcement before the actual Journal Post: We made our fundraising goal! We surpassed $1,000 and we would like to THANK everyone who donated. Your donations make such a huge difference. 🙂 THIS DOESN’T MEAN WE’RE DONE! We still have two weeks until the buddy walk, so there is still plenty of time to donate if you haven’t. will take you to a safe, secure donation site. AFter all, goals are nice, but learning you can surpass your goals is so much better….take it from Ben. 🙂 ***

Yes, it’s been a long time since I’ve posted a real update, and I guess we have been pretty busy around here. First things first, we did have a party for Ben’s sixth birthday (six months, that is), and it was fabulous. We were worried about the rain (we had the party two weeks ago…and what they predicted was a 30% chance of rain turned into 100% chance by the time the day arrived) … we just set up some tables in our garage and everything worked out fine. Ben had a great time playing with the “big kids” who came to his party, and the day was fun fun fun. We’ll see everyone again in six months for a one year celebration.

Ben continues to be loving his solid food. To date we have tried sweet potatoes (thumbs up), peas (thumbs up), pears (thumbs up) and bananas (thumbs down…probably too thick). Scott and I are also learning a few things about what Ben likes and what he does not like. After a few days of mixing his food too thick and Ben just refusing to eat it, I made it a little thinner again, and all is well. When he’s eating, he has developed the habit of wiping his mouth off with his bib, then throwing his hands around while opening his mouth wide as if to say “MOM! BITE! NOW!” He also talks a lot when he eats, and yes, blows cereal raspberries. He loves his food. 🙂 We continue to offer him water from a cup, which he LOVES…he has his own little plastic cups and likes frequent drinks while eating. I know that he might master a sippy cup faster, but I kind of want him to be able to handle a real cup before we take the easy route of using the sippy. Yes, a lot of the water still fails to make it in his mouth, but he’s having a good time and one day he’ll figure it all out. 🙂

Ben is growing like a weed, too…this week he weighed 13.7 lbs. Last week when he was measured he was 27.5 inches long. This means that at 6 months, he almost doesn’t fit into six month clothes, not because of his weight, but because of his length! The solution? I bought him sleepers without feet so that he can stick out of them and wear them a little longer. 🙂 Ben has this strange obsession with getting dressed…he thinks taking clothes on and off his the funniest thing ever…and always gets this big dorky smile on his face when we dress or undress him. Very cute.

School started this week, and it does feel strange to be home, although I’m still enjoying it. I’ve found some activities that we will be doing (classes at the library), as well as some things to do on my own once a week (I’m going back to band!) to keep my sanity. Ben has playdates with his little friend across the street who is a week younger (pictures in a couple days!) and loves that. The big news is that after labor day we have an appointment with the pediatrician for a physical and the first round of immunizations! Even Ben’s cardiologist suggested it was time to start thinking more in terms of a long term care model…so we’re going to get him checked out. He will remain on hospice, with visits once a week, but we think its time to make contact with the ped. and start shots, since we take Ben out and about so much. That should be an adventure!

Labor day weekend will be a quiet at home for the most part, Scott has a three day weekend and we’re all looking forward to the relaxation. Sunday will be a party at Rick and Karens (fun fun!)…Ben will be bringing his Jammies because we plan on being out past his bedtime. It’s great to have friends that you know you can bring your kids and all the accoutrements that go with them…just because you know you are staying awhile. 🙂 Last year at this time I was working all weekend (literally…Scott was out of town and I worked on school plans like crazy). I don’t remember a Labor Day I wasn’t using to catch up for the start of school, so I’m looking forward to some family time. Enjoy your weekend everyone!

Just like my daddy, I love to eat!!

Ben’s very comfy chair

Trying out the cup…thank goodness it’s only water so far, because cups are messy. 🙂


2 Responses to “It’s been such a long time!”

  1. dc_chick06 Says:

    wow, he’s getting so big. I love the first picture, it’s totally adorable!

    -Brandy Van Camp

    • Anonymous Says:

      What an awesome story. We’ve been following it since you told us you were expecting. My wife and I live in Guatemala now. We think about you every time we see a Down’s patient here. And we see a lot! It’s a very common thing here. Never forget how lucky you are to be in the U.S. It’s very different here.

      Keep all the great pics and stories coming and we’ll keep ya’ll in our prayers.

      Matt and Heidi Bell

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