Happy First Birthday, Ben!

Ben and Me at Feeding Clinic 

And what a busy birthday it was!

The weather was sunny and gorgeous.  Ben had a 9:00 am appointment at our favorite tertiary care center for a Feeding Clinic evaluation.  Since the drive is more than an hour long, we all needed to be up very early.  We meant to get Isaac dressed for school and put him on the bus, but he awoke wheezing and coughing.   The wheezing did clear up with his inhaler, but I was uncomfortable sending him to school during an asthma flare if we were going to be out of town.  So we decided not to send him to school at all, and he ended up coming with us.

Ben had a very good initial session at Feeding Clinic.  The director of the program (who is a very gentle, soft-spoken person) spent a long time talking with us and getting Ben’s medical history.  Then we put him in a high chair (for some reason Mark chose a “manly” pink bib for him) and the director of the clinic fed Ben a mixture of apple, carrots and mangoes.  Yummy!  Ben ate a little bit with a minimum of gagging, and no choking.  Apparently Ben has what the director calls “a pathologic tongue thrust”, and we will have to retrain his tongue not to push things out of his mouth.    But he was pleased with how Ben did overall, and we are all hopeful that we can transition Ben to oral feeds soon.  We will be working with Ben about 2-3 times a day with oral feeds, and hopefully have him scheduled for a swallowing study in the next few weeks.

Ben Feeding Therapy 2Jonny at Feeding ClincIsaac at Feeding Clinic

The older boys occupied themselves with toys and video games during the long feeding session.  The clinic has a very relaxed, kid-friendly atmostphere, and I was relieved that the older two weren’t bored and misbehaving.  After the Feeding Clinic we all went out to breakfast at the local Friendly’s.  I ate far too much! 

Ben carseatMark and JonnyIsaac and Me

Then we went to Lancaster, PA to visit their Barnes and Noble bookstore.  We don’t have one of these near our home.  The boys had a blast, and we bought a lot of cool books, mostly about space and the solar system, which Isaac is really into these days. 

During Ben’s feeding session this morning, we had a revelation: the high chair at the clinic could recline, which would be a great feature for Ben with his limited trunk strength.  We’ve never had a high chair like that even though Ben is our third child, so we went to Toys R Us to buy him one.  We figure he’ll get years of use out of it.  While we were there we also got him a cool brand new Exersaucer, but we haven’t assembled it yet.

New High Chair

We came home just in time for Ben’s physical therapy session.  He wasn’t too happy at first (he had fallen asleep on the ride home and hadn’t taken a morning nap), but he cheered up thanks to big brother Jonny.

Jon and Ben floortime 

We had such a pleasant day spending time together as a family (FYI: Isaac didn’t wheeze once while we were out!)  I had worried that having to go to the same teaching hospital where Ben was in the NICU almost exactly one year ago would bring back nothing but painful memories, but today wasn’t like that at all.  I think that in many ways this has been the longest, most difficult year so far for our family, but today was all about sticking together, enjoying each other, and having hope for the future.


13 Responses to “Happy First Birthday, Ben!”

  1. markruinsdinner Says:

    Yes, it was a wonderful day. And I chose that pink bib for a very good reason: It was clean.

  2. Lawrence Says:

    Happy Birthday Ben!

    And congrats to your family for sticking it out together. I really am very happy to see you all having so much fun together the past year, all in the face of a difficult situation; I think that is what it is about. It reminds me very much of Mom & Dad, Karen & I when Maryam was born. A strong, loving family unit really does make a huge difference in the lives of special children; just look at Emmy-J now!

    Here’s to another GREAT year for you all!!!

  3. Lisa Says:

    so glad the feeding clinic went well. sounds very promising. david did LOTS of tongue thrusting, but we worked on it a lot and he slowly improved. no more g-tube! good idea on the highchair, too. david LOVED his exersaucer and it really built trunk strength, then we moved him into a baby walker. i know some people say these create bad habits for kids, but for david it gave him a new lease on life–he could get around and explore. every child is different, but the awesome thing about your family is that you look at ben’s needs and come up with creative ideas to push him to the next level. having a child with a disability will either tear your family apart or bring you closer. so glad you are making time to be together and love on each other! the first year is over, you made it and i love that you are celebrating the future!!

  4. Christine Says:

    Happy Birthday Ben!! Even though its a day late….

    One of my triplets has some food aversion issues. I read up on it and found that whatever he liked, foodwise, I would make it thicker and thicker every time and then add new foods into the mix. It seems to be working. I know Ben has other issues and am not trying to compare the boys at all. 🙂 But it sounds like he is on is way to oral feeds!!
    As for the hardest year, its over. Only good things are to come. At least thats how I try to handle things. I took my boys to the NICU, that they knew so well, on their first birthday last month to visit the wonderful nurses. I wanted to take them because I had to get over my fear, panic, and anxiety about what happened there. I was so glad that we all went. Oliver, the one who was in the longest and had the worst of the problems, actually remembered the voices of his two favorite nurses. It was so great. Plus there was a baby being discharged that day that had the same issues as Ollie and I got to reassure the Mom that babies do make it to their first birthday and beyond even if there have been problems.

  5. Grandma/Mom Says:

    I wondered about the “pink bib”. I like those pics very much, esp. seeing Karen with her fancy hair-do. Looks great.

  6. JayMonster Says:

    Happy (Belated) Birthday Ben!

  7. Grandma/Mom Says:

    Lawrence, as far as I can recall, it did take you some time to get used to the fact that Mary wasn’t the brother you longed for (hehe) And BTW, in case the rest of the family forgets, Happy Birthday to you. We all love you very much.

  8. Lawrence Says:

    Well, in many ways, Maryam was my little brother. Sometimes things are not as they seem on the surface. You will remember that Maryam seemed to absolutly LOVE rough play, which I think was the major part of a brother that I wanted. So everyone wins!

    Thanks for the birthday greeting. How I wish I was with loved ones….

  9. Karen Says:

    Thanks to everyone for all the birthday wishes for Ben. We finally got the Exersaucer up yesterday. Will have to post pictures on my next post. 🙂
    Happy birthday to Lawrence – we don’t exactly have a phone number for you so we can’t call…

  10. Granpa/Lars Says:

    Karen, Mark: That WAS great-sounding news for everyone, and an especially good birthday present for Benjamin, which will only be fully realized with the passage of time. (I’m talking about going on regular feeding (eventually, of course, but ASAP, right?)
    Lawrence: It’s good of you to remember the good times we all had while your 4 kids were growing up even though we all had our rough times – enough to keep us all busy at the best of times. Keep that positive perspective, son: the glass is half full, not half empty.
    And just as a reminder to me and everyone reading this: having a “special child” to care for without doubt makes the most ordinary family very special, right? Right! Now answer this: “Which child in the whole wide world is NOT special?”
    Here’s to us all celebrating Ben’s and Lawrence’s birthday together NEXT YEAR: that would be nice, whether we have a tropical venue or a temperate one.

  11. Granpa/Lars Says:

    OOPS! Lawrence has 0 kids : I meant to say YOU 4 kids, meaning of course, Karen, Lawrence, Maryam and Aliyah. I plead sleepiness. Sorry. 🙂

  12. Karen Says:

    I vote for a tropical venue!

  13. kelly Says:

    Oops I missed little guy’s birthday. Happy belated birthday Ben from The Garners in Wales. That high chair looks super. Our current one, we had for Sylvie, well I cant imagine Sonny in it. He still lies back in the buggy and bouncer etc..His legs are very strong but upper body is what we are working on in physio. Maybe the chair is an investment we will make. Its good because he is also high up and could sit and watch from a higher level.

    He’s looking fab hun 🙂

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