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

Saturday, November 20, 2010

November 22, 2010

The crazy schedule continues. We have quite a few appointments lined up at Children's in between all the therapy sessions.

Tomorrow we're at the Children's Clinic at Mass Eye and Ear. Benjamin's eyes are still a mess. He will focus, but only briefly and then his eyes will either cross or he'll drop his gaze. He avoids his mobile completely now, but for some reason he's fascinated by the warning label on inside of his carseat. Go figure.

He's actually going to see a urologist next week. When we met with the nurse practitioner and doctor in CCS (Complex Care Service) we went over, in detail, his medical history. I mentioned that he had a renal ultrasound a while back and we were told it was normal. Well, when they uploaded the ultrasound report, we found out that he does still have calcifications in his kidneys!

Benjamin's been working really hard over the past few weeks with his physical therapy and we're noticing a slight difference. His neck seems to be getting stronger, and his grasp is a little tighter. He's 8 months old, 5 months adjusted, and at about 1 month developmentally (at least that's according to the milestone charts I've found online). We have a long way to go, and it's unbelievably frustrating at times, but even the smallest amount of progress keeps us pushing forward.

We are still having major issues with the bottle, but I am cautiously optimistic because he's started nursing a bit again. Knowing Benjamin, this could come to a screeching halt, but hopefully not. It's a good thing I didn't stop pumping completely, but I have been trying to bump my supply back up because he's losing a little weight and it's not easy. He's still being fed at night continuously over the pump for about 11 hours. That being said, if he's not getting enough right now during the day, at least he's getting a good amount at night. When we met with CCS, he wasn't taking the bottle, he wasn't nursing, and he was spitting upwards to 4 times a day. They started talking about more surgery (possibly a nissen fundoplication or converting his g-tube to a gj-tube). We were adamant that he does not need the fundo or the gj-tube. Since that meeting, the reflux is still noticeable, but he only spits maybe two or three times a week. I think now that he's not spitting nearly as much, and he's obviously not in pain when he swallows (because he's nursing), I don't think the endoscopy is necessary either.

Let's hope the little man keeps up the good work and starts gaining some serious weight again!

Friday, November 5, 2010

November 5, 2010

Life sure isn't getting any easier for Benjamin or for us. He's been vomiting almost after every feed and even when we administer his meds now. It's really hard to get the reflux under control when he throws up his medication!

We were at Children's on Monday and Tuesday of this past week for an upper GI and a swallow study. The upper GI took almost 4 hours because Benjamin had to keep getting x-rays every half hour or so. It ruled out any narrowing or strictures in his bowel (which was such a relief). The barium swallow was done to determine if Benjamin could be silently aspirating. We were in the room the entire time and I can honestly say it was the most bizarre and disturbing experience. They sat Benjamin in this plastic seat and asked me to feed him a bottle of barium. He started screaming which I knew he would do because he has an oral aversion. I told them I wasn't comfortable feeding him like that, and asked if one of the techs could take over. After a few failed attempts with the bottle, they decided to try and spoon some rice cereal mixed with barium into his mouth. At this point he was sputtering barium and gagging. They then brought out a sippy cup and told us they would have to pour the barium down his throat! They handed him back to us and the poor little thing even had barium around his fingernails. He never aspirated, but the conclusion was he has trouble protecting his airway. Umm, do you think it's because he was screaming the entire time?!? Anyway, we now have to thicken his bottles with this gel-like substance called simply thick. He seemed to do well the first few times we fed it to him, but now not so much. We're going to try a thickening powder to see if that makes a difference.

We were busy the rest of the week as well. Benjamin had his first session with his teacher from the Perkins School on Tuesday morning. It was a shame he slept almost the entire time! He has an opthamology appointment at the end of the month and I think the recommendation for glasses is going to be sooner rather than later. He's starting to have a lot of convergence (his eyes are crossing) when he tries to focus. It appears as though he can see about 6 inches in front of him and then loses vision beyond that. He has been maintaing eye contact with me for longer periods of time when I hold him, but he's still not doing a great job of tracking.

On Wednesday his Physical Therapist from EI came over. She was able to show me how to move him into different positions to stretch some of his muscles. He has major sensory issues and she spent most of the time trying to calm him down and get him into a position he could tolerate. I've noticed when I'm holding him and he's comfortable and sleeping, the minute I move even an inch, he tremors and screams.

Thursday morning we were at the Outpatient Rehabilitation Center at South Shore Hospital for an OT evaluation. Again, the therapists couldn't do much with him because he was so sensitive, but were able to learn alot about him and they couldn't get over his eyelashes. Everywhere we go, that's the first thing people notice! I think we'll be at the hospital at least twice a week, if not three times (one day each for OT, PT, and Feeding/Speech).

Benjamin got his first Synagis shot Thursday afternoon. He was not a happy camper. Even before he got his shot, he decided to vomit all over himself. Good times. We cleaned him up and then it was time for him to have his shot. They split the dose into two injections, but were kind enough to administer them at the same time. Benjamin screamed so hard he actually held his breath and turned blue. The nurse blew in his face and he still wasn't reacting. She scooped him up and started patting him and finally got him to breathe. This happens almost every time he has an immunization! I feel so bad for him and he has to have this shot every 30 days for the next 4 months. I think Dad might take him next time!

Next week is going to be just as busy. We have a PT evaluation at South Shore Hospital on Monday, Feeding Tuesday morning, EI Tuesday afternoon, and we're back to Children's Friday morning to see a doctor in the Complex Care/Cerebral Palsy Clinic.

I feel bad because I don't have the time to do as much with Jadyn. She's been a real trooper and I've been trying to spend as much one on one time with her as I can... even if it means taking her grocery shopping at 8:00 on a school night! Bad mommy. I am also starting to realize how neurotic I've become. The other night I was taking Jadyn home from my parents' house. Benjamin went in one car with Ryan, and Jadyn was with me. She said "I should be next to Benjamin... he's not in this car with us and I can't tell you if he's breathing!" I didn't know whether to laugh or cry when she said that.