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

Tuesday, January 25, 2011

January 25, 2011

It's been forever and a day since my last Benjamin update, but there's not much to write about. It's hard for me to see the changes in him because I'm with him practically every hour of every day. I really need to start taking weekly videos of him so I can look back and actually see the progress he's making because I think it'll make me feel better and maybe a little more hopeful.

Right now his eyes are worrying me. They're big and beautiful, but he's just not using them! I have been going crazy trying to figure out how he could go from tracking objects and his mobile months ago when he was in the hospital, to a blank stare. I was talking to his Perkins School teacher and we realized the deterioration in his vision occurred shortly after he started the neurological meds. It makes total sense. The drugs are used to "calm" the brain and reduce irritability and spasticity, but they probably don't calm only certain areas of the brain... so I'm convinced they're impacting his visual development. We actually saw Benjamin's ophthalmologist today and he said it's not out of the realm of possibility. He said he's seen adult vision affected by these meds and there's no reason not to believe they're related to some degree to Benjamin's vision problems. We have an appointment with Neurology on Thursday and I really want to see him weaned from these drugs. I know his neurologists are going to be hesitant about taking him off the drugs because they also have the benefit of preventing seizures. At least we can argue that Benjamin has been less irritable, which would be one pro for weaning the Neurontin. He still has his moments, don't get me wrong, but the time it takes to soothe him is getting shorter. His EI therapist saw him today and she said she saw a difference so I know it's not in my head. I will admit, I do have moments of insanity, but this was not one of them!

Quite a few people have been asking me how his Renal appointment went and we know the same now as we did before the appointment. I thought he would be getting an ultrasound. Never happened. It was never even scheduled! We basically had an appointment to meet yet another doctor who would give us another possible medical issue to worry about. We were told because Benjamin had, and may still have, kidney stones, he could be susceptible to getting them over and over again. This doctor also said that has the potential to suffer kidney failure down the road given his medical history. I was told to have some concern, but to not be "overly concerned." Gee thanks. They tried to get a urine sample, but most of it ended up on my pants because the bag they put on him wasn't on correctly. I should mention that happened AFTER I was puked on. They wanted to get a blood test the same time as the urine sample so they were kind enough to give us our own bags and told us when we came back for our Complex Care appointment, we could give all the samples then. So basically I left that day with no answers, a cranky baby, throw up in my hair and down my shirt, and urine all over my pants. Thankfully my wonderful dad was with me because I think I would have screamed and cursed (well, I actually did, but he was there to keep me company and listen to me rant and rave).

Saturday, January 1, 2011

January 1, 2011

A few days after my last post, we got the call that Benjamin's glasses had come in. I thought it was ironic that a friend of mine emailed me that very morning to tell me that it was Saint Lucia's day (she's the patron Saint of the blind) and that she said a prayer for Benjamin's eyes. His glasses weren't due in for another 4 or 5 weeks. I was thinking it was an omen and that we needed to get those glasses asap! On our way to pick them up I was filled with a bunch of different emotions... sadness because my baby had to wear glasses, excitement because maybe he could finally see, and nervousess because what if he couldn't. It took awhile for him to adjust to them and after about a week, we started seeing slight improvements. His eyes aren't crossing as much and certain things catch his attention (mostly shiny objects), But, he absolutely hates them. The wire frames leave marks on his little face and are always sliding down his nose. We've decided to get him another pair that are so flexible you can actually bend them. They'll be in next week, and I'm keeping my fingers crossed he doesn't scream when he has to wear them like he does now.

We've got a busy month of doctors' appointments. Monday we'll be going into Children's for an ultrasound on Benjamin's kidneys. Hopefully his kidney stones are gone. If not, I'm not sure what the course of action will be. Later this month we'll be meeting with opthamology, neurology and complex care.

Benjamin had his first therapy session in the pool a few weeks ago and did really well. His legs were very easy to move in the water and the therapist was able to give his muscles a good stretch. He did a lot better in the water than he does "on land." He has major problems when he is transitioned from one position to another. For example, if I calm him down in my arms and then gently put him on his back on the floor he is usually okay. However, as soon as I try to turn him onto his side, he flips out and will scream until he turns blue. It's also extremely hard to break his extention when he tenses up. When he's upset he'll throw his head back, arch his back and kick his legs out. We have to fight him and try and curl his body inward. Once we can break that extension, it's not as hard to calm him down.

Anyway, good riddance 2010! We were only three weeks into the year when I got the devastating news that I had twin to twin transfusion syndrome and it was downhill from there. Although I'm unbelievably grateful that this past year brought us Benjamin, I've never been more excited to see a year end. I'm hoping 2011 brings my family and friends good health and happiness. I can't wait to spend the summer with the kids down the Cape, like we should have been doing last year, and I'm looking forward to watching Benjamin reach his milestones and surpass everyone's expectations.