I feel as though a lot of craziness has happened since my last post. We had a good appointment with Neurology. They didn't argue with us at all about dropping Benjamin's neuro meds. They decided we should start with the Neurontin. We gradually decreased his dosage, and he was completely off after about a week and a half. So far, we haven't noticed much of a difference with his eyes. We're going to slowly start to wean him off the Clonazepam (Klonopin), starting today. He probably won't completly come off until the beginning of April (it has to be that slow). Hopefully we'll start to see him gain some strength in his neck and upper torso after we get rid of this one. It's so sad that he's 11 months old and he still can't hold his head up for more than 3 or 4 seconds at a time.
He's been more irritable than normal lately and I don't believe it's related to the lack of Neurontin, even though the purpose of that med is to treat irritability. He's definitely teething and it almost looks like he's going to get quite a few at once. I can't feel the "points" yet, but there's a lot of whiteness going on and a few large bumps.
Although the Pats didn't play, Superbowl Sunday was memorable for us this year that's for sure! We don't know how it really happened, but Benjamin managed to remove his g-tube without his hands! I have a feeling he arched it out. It was due to be replaced soon anyway and we think the balloon that's used to keep it in his belly was leaking. I have to say we handled the situation beautifully... I had envisioned this happening at some point, and thought when it did mass panic and a lot of screaming (on my part) would ensue. This is basically what happened:
Ryan: (In the process of trying to calm Benjamin down) "Ummm, yeah, okay... Jackie? The g-tube's out!"
Me: "Huh?"
Ryan: (Walking toward me with Benjamin in one arm while holding the g-tube with deflated balloon in his hand) "Benjamin managed to get his g-tube out."
Me: "Are you kidding me?" (I go into auto pilot, grab baby, put him on his changing pad, slap a piece of gauze over the open hole in his belly and tape it down like crazy, hand baby back to dad) "Okay, take him to Children's! I'll stay with Jadyn."
Ryan: (Grabs the replacement g-tube the therapy company sent to us that we were supposed to take to Dr. Buchmiller for her to put in) "Well, we have the replacement g-tube... I'm going to do it myself!"
Me: (Looking at Ryan in horror) "Are you out of your mind??? We haven't been shown how to do this yet!" (Grab g-tube box out of his hand). "Go turn the car on so it's warm, I'll grab Jadyn and we'll all go to the ER in case I need to feed Benjamin." (If I had actually thought for a second I would have realized I couldn't feed him until the new tube was placed because the milk would have just leaked out of his belly.)
Jadyn: "What's going on? Where are we going?" (I explain what happened) "Can I see it?? I want to see it!!"
We were in Children's in record time (less than an hour) and we were told the g-tube hole had already started to close! We were there for about 3 hours because the ER docs had to contact surgery to figure out which dept. was going to put the tube in. They explained to us that this replacement was a little more complicated because the new tube is the next size up and it had to go through a small amount of vascular tissue. Thank the lord Ryan didn't decide to play doctor at home! Jadyn, god love her, was literally standing in the middle of all the doctors so she could see the action. I was in the back of the room because I couldn't bare to watch and she kept asking if she could look at the hole again!
After pool therapy the following Friday, we noticed his g-tube site looked purple/red and blistery. We thought, hey we're at South Shore, might as well take him down to the ER and have it checked out. Big mistake. I asked at the desk if they thought we would be there long because we would go to Children's instead. They said we would be called right in and a doc would take a look at it. We waited for about half an hour and were only called in because I told them I needed a place to feed Benjamin. We ended up waiting for almost 4 hours to see a doctor. We had Benjamin in his carseat and we were ready to walk out when he finally came in. He thought it didn't look that bad and we got a prescription for a cream that basically did nothing. I don't think I will ever take either one of my children to that ER again.
This morning I took Benjamin to see one of the Children's surgeons who runs a clinic out of South Shore every Tuesday. He was wonderful. He took one look at the site and said the blistery looking area was some granulation tissue. He recommended treating it with a silver nitrate stick and that's what he did. He burned the area before I could even comprehend what was going on and that was it! His skin around the g-tube is now black which I find very disturbing. Benjamin didn't like that experience so much and basically screamed the rest of the day. We get to repeat it again next Tuesday. I'm so looking forward to that.
The icing on the cake was the unexpected call I got today from one of Benjamin's Neurologists. At our last appt. they recommended he get an MRI when he turns one. We reminded them that he has that piece of wire stuck in him from when they tried to get his central line during his last big surgery. They said before they booked the MRI, they needed to follow-up with surgery about that wire because it may not be safe for Benjamin to have an MRI. Well, come to find out (from my conversation today), the wire, is actually stuck in his vein and it has the potential (although unlikely) to travel to his brain during the MRI. They went so far as to call the manufacturer of the wire and this company could not gurantee 100% that this wire is MRI compatible. So, since this MRI is nothing urgent, I was told they're going to hold off. That's all fine and well with me, but my son will probably need an MRI at some point and how are we going to figure this out??!! Ryan and I are going to have to push for some answers on this one because this isn't right.
Tuesday, February 15, 2011
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).
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.
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.
Saturday, December 11, 2010
December 11, 2010
Benjamin turned 9 months old today. I know it's been weeks since I last posted, but not much is new in his little world. Shortly after my last update, we took a ride to pick out Benjamin's glasses. Yup, the little man will be sporting a pair of specs in about a month and a half (it takes forever and a day for Mass Health to ship the glasses). I'm praying so hard they'll make a difference. We've been trying to get him to look at us, his toys, anything; and if he does, it's very brief. It really worries me.
As far as the rest of him goes, he's definitely more alert, but the arching is getting bad again. Most likely because we weaned his Clonazepam (Klonopin) down almost by half. We're not scheduled to meet with neurology until January, but we may have to make a phone call if it gets any worse.
He's still nursing and we've been experimenting with solid food! We just touch it to his lips, and if he's in a good mood, he'll start smacking. It's very cute. Obviously he doesn't get much... the point is just to introduce him to new tastes and textures. So far he doesn't seem to mind bananas, squash and prunes.
Last week we attended a mass of remembrance provided by South Shore Hospital for those families that suffered the loss of a child. It was a beautiful service, but depressing. Sometimes we feel very alone so it was comforting to talk to others who have experienced loss. I can't believe it's been three quarters of a year since I had my babies. Every day that goes by, whether sunny or not, is still cloudy for me. I'm finding the holidays to be especially tough. I push forward, and for the sake of Jadyn and Benjamin, I put a smile on my face, but the pain over the loss of Stephen is still so fresh and raw. Not a day goes by that I don't think about him and wish with all my heart that he was still with us.
As far as the rest of him goes, he's definitely more alert, but the arching is getting bad again. Most likely because we weaned his Clonazepam (Klonopin) down almost by half. We're not scheduled to meet with neurology until January, but we may have to make a phone call if it gets any worse.
He's still nursing and we've been experimenting with solid food! We just touch it to his lips, and if he's in a good mood, he'll start smacking. It's very cute. Obviously he doesn't get much... the point is just to introduce him to new tastes and textures. So far he doesn't seem to mind bananas, squash and prunes.
Last week we attended a mass of remembrance provided by South Shore Hospital for those families that suffered the loss of a child. It was a beautiful service, but depressing. Sometimes we feel very alone so it was comforting to talk to others who have experienced loss. I can't believe it's been three quarters of a year since I had my babies. Every day that goes by, whether sunny or not, is still cloudy for me. I'm finding the holidays to be especially tough. I push forward, and for the sake of Jadyn and Benjamin, I put a smile on my face, but the pain over the loss of Stephen is still so fresh and raw. Not a day goes by that I don't think about him and wish with all my heart that he was still with us.
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!
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.
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.
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!
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!
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