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

Friday, October 22, 2010

October 22, 2010

Yesterday was an extremely long day and we're glad it's over. Our first appointment with Neurology (the one I was dreading the most) went as well as it could have gone. We saw two neurologists and they actually thought the spasticity (rigidness) in Benjamin's legs wasn't as bad! They decided to cut back on his Clonazepam (Klonopin) because although it relaxes the muscles in his legs, it's not helping the hypotonia or low tone throughout the rest of his body. It also sedates him so hopefully now he'll have more alert time. The attending neurologist also stressed the importance of Benjamin taking the bottle and not relying on the g-tube. He said this is the age where babies lose the suck reflex and it's crucial that he maintain it. He will be sending his report with a CP diagnosis to Early Intervention so Benjamin will be guaranteed the three years of service which is good, but a reality check for us.

After Neurology, we were off to the Pulmonary Clinic where Benjamin's pulmonologist put the fear of God into us. We're waiting for our insurance company to give the okay and schedule delivery of Benjamin's Synagis vaccine (to prevent RSV) to his pediatrician. Dr. R asked us if Benjamin has had his first dose yet and we said no. He said the minute it gets to the pediatrican's office, Benjamin has to have it. He also wrote a prescription for Benjamin to have an aerochamber spacer. Basically a fancy sounding name for an inhaler with a mask. We'll use it if Benjamin should get a cold. We also have to keep a log of his daily respiratory rate.

The last stop of the day was the CAIR clinic (Center for Advance Intestinal Rehabilitation). I was most anxious to go to this appointment because I wanted to talk to a GI specialist to get Bejamin's reflux under control. It's getting worse and he's starting to develop an aversion to the bottle. They decided to stop his Erythromycin and told us to try additives that are vanilla flavored. They're allowing us to refrain from using the pump during the day and only give him the bottle as long as we add the calories to the milk. They want us to continually feed him overnight through the pump which I'm not thrilled about, but they think it'll help with the reflux.

I think he's starting to associate the bottle with painful reflux. It's taking longer and longer to get the milk into him and he screams almost the entire time and then usually chokes. I'm the only one he'll take even the smallest amount from and it breaks my heart to force him to eat, but I'm persistent. It's so sad... the minute I sit down with him and he feels the bottle touch his lip, he goes crazy. It took me an hour and a half tonight to feed him an ounce. What should be an enjoyable experience for him has turned into torture. His pediatrician almost tripled his Zantac dose today and I'm praying that makes a difference. If not, we'll try to switch him from Prilosec to Prevacid.

Thankfully our appointments at Children's will not be as frequent anymore (we'll be there once or twice a month), but Benjamin and I are going to be busy, busy, busy! EI will come and assess him next week and hopfully they'll start therapy a week or two after that. Also starting in November, Benjamin's teacher from the Perkins school will be coming out and we'll be making trips to South Shore to meet with a Feeding Specialist and get additional PT and OT. Benjamin's pediatrician and I agree that this time in Benjamin's life is so important and we need to hit the ground running!

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.