"Whether we are filled with joy or grief, our angels are close to us, speaking to our hearts of God's love."

Tuesday, October 12, 2010

October 13, 2010

It's hard to believe Benjamin is 7 months old. At least half a dozen times when we're at Children's for an appointment, people have asked us how old he is and we have a really hard time answering that question. I start off by saying, "well, he's 7 months." The usual reaction to that is a raised eyebrow, so then I feel as though I need to explain and I launch into the following. "He's so little because he was extremely premature. If he was born on his due date, he wouldn't even be 4 months old." Blah blah blah. I think we may just start telling people he's almost 4 months. But, that's going to get tough because developmentally he's already way behind and I'm sure within the next few months that's going to be even more detectable.

Early Intervention will be coming out in two weeks to do an assessment and hopefully Benjamin's therapy can start shortly after that. He's showing more symptoms of the CP which is heartbreaking. He's got hypotonia, really low muscle tone, in his neck and trunk (I think that could be the reason why his breathing is so shallow) and increased tone in both his legs. We've been trying to work with him at home, but it's hard because we don't know what's most beneficial and what could possible harm him. We have him spend a lot of time on his tummy, but it's been more challenging for Benjamin because of the g-tube... I'm sure laying on a button sticking out of his stomach isn't very comfortable! He's also giving us a hard time when it comes to taking a bottle. He's stopped nursing, and now usually screams, turns red and tremors when you put the bottle in his mouth. This morning it took me almost an hour to get 55 mls into him. He likes leisurely sucking the bottle while he's in my arms and I'm walking around the house. Who would blame him for not wanting to stay in one spot after being in a hospital bed for 6 months? But jeez, the kiddo weighs over 11 pounds now and it's not easy lugging him around! But we'll do whatever it takes to get him to enjoy his bottle again. He used to do such a great job and now it seems like a chore to him. A few weeks ago I was sure we were on our way to getting rid of the g-tube and now I think he's going to have it a lot longer than we anticipated.

I think this is the first week that we don't have to drive into Boston for a clinic appointment. It's nice for Benjamin to have a break because let me tell you, those appointments aren't necessarily quick check-ins! It's great when we can schedule more than one appt. on the same day, but it's draining. Next Thursday we see Neurology, Pulmonology and Intestinal Rehab so we'll be there from 8am until probably 4pm. Plus, every visit almost inevitably involves a trip to the lab for bloodwork. Not fun for Benjamin or his mom and dad. In a couple of years, I forsee a stop at Toys R Us on the way home from these clinic appointments!

Aside from trecking back and forth to Boston and to Benjamin's pediatrician, we've been shut up inside the house trying to keep Benjamin healthy and both kids on some sort of schedule. We know there are a lot of people anxious to meet the little guy, but we've been told to keep everyone at bay until the winter months are behind us. We've even asked immediate family to keep visits on the shorter side because the scary part is that we can feel absolutely fine and still transmit germs to Benjamin! He will be receiving his first Synergist shot in early November. This will help prevent RSV which can be serious for babies with compromised immune systems. When we go into town, whether rain or shine, we actually keep a plastic rain cover over Benjamin's stroller. You'd be amazed at the number of people that want to stick their heads right in his face!

I haven't been as great about updating the blog and hopefully as things get a little easier around here (if that's even possible) I'll have more time. We think it's absolutely wonderful and heart warming when people tell us they've been following Benjamin's blog. Thank you.


  1. Hi Jackie! I am absolutely amazed that you have anytime at all to post. Your family is incredible. I just wanted to let you know that I have a couple of friends who had premature babies and they always say their child's chronological and adjusted age and everyone seems to get it. So something like Beatrice is 6 months but since she was a preemie her adjusted age is 4 months. Prayers and hugs to your family!

  2. We follow the blog all the time Jackie! Love to see how the little guy is doing and continue to send positive thoughts and prayers for you ALL! Keep up the brave work, Mom and Dad! Love, Meg Enwright

  3. Hi there. Our little guys' stories are different, but Owen has a number of similar diagnoses (he's three now). You are doing an amazing job
    nurturing this new, little life that graces your world. Feel free to reach out should the opportunity arise. In the meantime, make sure to nurture yourself also.

    Stacy Marshall
    Indianola (Seattle), WA