A long awaited long update

Happy fourth to everyone. The past week has been crazy busy!

Last Thursday Ben and I went to see the “music lady”. The Parents of Down Syndrome (PCDS) group, which is a parent support group for familes who have children with Down Syndrome, has programs twice a month in the summer with “Miss Paula the Merry Music Lady”. Miss Paula does music, dance and activities for the kids. The programs are attended by not only kids from the PCDS group, but kids from the early on programs at the Wing Lake facility in West Bloomfield. Well, Ben is a little young for dancing and parachute playing, but he had a great time hanging out in the Bjorn while I met some other moms and talked with some I had already met. We had a fun day, and we’ll be back in July…maybe Ben will stay awake for the next trip! I like taking him to things like this, but I’m always aware of where we are and who might try and touch him….we wear the Bjorn carrier because it is less likely that people will poke at him while he’s on my person. And Ben likes it. So far he has only been facing me….he has enough head control to be facing out (the structure of the carrier gives him the torso support to do this, too), but every time I talk he cranes his neck backwards to see me, and it just gets ridiculus. We’ll work on this around the house in the coming weeks. šŸ™‚

The fourth of July was sooooo much fun. Scott and I always go to Ludington, as I stated before, to stay with some friends at their cabin. It is relaxing and fun, and we look forward to it every year. We were a little nervous about Ben traveling on a three hour tour (haha) in the car, but he did well. We stopped halfway to change him, get him out of the carseat and make sure he was okay….Ben slept on….as usual. šŸ™‚ As for the cabin time, he did SO well….we went out on the boat, he went swimming (kind of..) and just had a great time. We bought him a small PFD (personal flotation device…a lifejacket), which he doesn’t mind…and he was really cute in it. For some reason we only have video of that, though…hrm….. Next weekend (saturday morning, in fact) we will be going to Scott’s family reunion near Coldwater, so that will be another big landmark in Ben’s summer.

In more every day items, Ben is ALMOST twelve pounds….eleven fifteen, he has recovered nicely from his cold and is back to normal activities, which include sleeping, eating, smiling, and being cute. He is getting much stronger with his neck….most of what limits his mobility right now is his lack of torso control, but we’re working on that. when he is held up, his neck os pretty stable, and he is able to look around. He is too snuggly to lift his head when we hold him, so I’m trying to hold him away from my body more often….he just likes to snuggle into my shoulder too much. How can that be a bad thing? We have been talking with the nurse about getting Ben immunized…originally, when we talked to the Cardiologist, it was left up to us…we decided to wait…but Ben is going so many places and doing so well that we have decided to take him to the pediatrician and get him immunized….I already know he is NOT going to like this. šŸ™‚ The hospice nurse and doctor are working on contacting the pediatrician to let them know about Ben’s history before we go. Who knew we would get to this point?

As for that, I know that a lot of people are saying to us “Isn’t there anything they can do” with a lot more frequency. As long as we know that Ben’s heart is not changing (which it is not) and the outlook for surgery is no better (it is not)…then yes, there are things that can be done, but in our opinion, they are not things that SHOULD be done. I know that people make these comments because they have come to love Ben as we do, but remember that for us and for Ben life is all about what we are doing right now, it is all about today, it is all about being normal for as long as possible. Medically, the only thing that has changed is that Ben is stronger than we thought. Scott and I choose not to spend whatever precious time we have with him traveling from place to place every month looking for answers that we want to hear, rather than facing the truth and living life to it’s fullest as long as we can. I know you love Ben. Believe me, I know it. The best thing to do for him is to make memories and teach him that life is to be lived to it’s fullest, and that is what we are doing. Ben is surrounded by love and he is thriving on that. He is living life with so much joy and grace. Please do not be sad for him, share the joy and love life with him while he is here.

On a lighter note,

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Ben’s newest trick: “hiding” his face. He thinks this is hilarious.

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What is not hilarious is Ben’s love for the fan. That is totally serious business. At least to him. He LOVES ceiling fans!

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“Mom, I’m so glad you remembered to pack my hands for the cabin…”

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Another example that Ben is not yet old enough to tell me no when it comes to fashion. Isn’t this hat the best?

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Ben was not such a fan of the swimming….the lake was a bit chilly…so here’s me, sunscreening him every morning, then stripping him down and expecting him to swim. In a cold lake. He was not amused. But it makes for good pictures. If you look really close you can see the pout.

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All in all, it tuckers him out.

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6 Responses to “A long awaited long update”

  1. Anonymous Says:

    That Hat

    Love the pictures! Love the expressions! Love the smiles!
    But. . .I don’t know, folks. . .the hat?!??!?! Is this really the dignity that Mr. Ben deserves??? Thanks for the update! Nancy Q

    • coffeemomma Says:

      Re: That Hat

      You’re probably right, but it’s the only hat he has with a chin strap, to guard against a stray gust of wind. Ironically, it’s the chin strap that makes it look as deligtful as it does. šŸ™‚ But to offset that, it does have his name on it….

  2. purlewe Says:

    lights and ceiling fans are small children’s best friends.

    LOVE the pack the hands foto.. Can you make me one for my desk?? I would love to ahve a pic of Ben next to my neices.

    love you. miss you. (saw a sign yesterday that said from me to moo on it and thought of you and melon)

  3. zoobily_zoo Says:

    The cuteness!!

    I took a hat of Tristan’s that he outgrew all the way to Mackinac Island to give to your mom and I forgot. Oh well, I’ll get it to you eventually. Tristan didn’t wear it very long, and it’s just too darn cute to sit in a box. šŸ™‚

    I’m glad the trip went well. It can really make it rough when they just aren’t feeling it.

  4. dc_chick06 Says:

    Wow, he’s getting SO big! I’m glad Ben is over his cold and doing well again. LoL, the hat is a nice touch, but be careful, him being a boy and all…he may not forgive you for that one in the future!

    -Brandy Van Camp

  5. Anonymous Says:

    Jocie has discovered you!

    Hey Corliss!!! (Randall)

    McGee told me about your super livejournal and your super little bundle of 4-month old joy! So here I am at work reading four months worth of entries to catch up!!

    I’m doing great. I have a BA in Psychology from OU and a Master’s degree in Library and Information Science (MLIS) from Wayne State. I’m working at the Bloomfield Twp Library and the Independence Twp Library (Clarkston) right now, and looking for a full time position somewhere in suburban Oakland County. Still living in Waterford, just steps away from Mott. I would love to visit, would you please email me so we can chat?

    jocie_b@hotmail.com

    Big Hugs for the whole fam,
    Jocie

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