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!
Saturday, November 20, 2010
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!
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.
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.
Tuesday, September 28, 2010
September 28, 2010
I wanted to give a quick update. We called Neurology and Opthamology this morning because we were convinced last night that Benjamin was going blind. Opthamology wanted to see him today at Mass Eye and Ear at 1:00. After we scheduled the Optho appt., we heard back from Neurology and they wanted to see him immediately. I don't know if they thought he may have had a seizure, but they suggested we call an ambulance to take him into Children's. We decided to do that thinking it would get us in quicker, and the EMTs told us we had to go to South Shore Hospital first for an evaluation. The doctors at South Shore said Benjamin's pupils were actually responding to light, but it took awhile. We tried to get him to track and he eventually did that as well. They called the Neurology team at Children's, and they all thought it was more pressing for Benjamin to see his opthamologist. We left South Shore and drove him to Mass Eye and Ear where Dr. M was working.
Our wonderful opthamologist, who has been examining Benjamin's eyes since birth, said he's pleased with the structure of his eyes, but he is concerned about CVI and it's something we won't be able to know until later. Again, we have to wait and see. He does seem to think the problem could be the neurological meds Benjamin's on. We'll be discussing this with Neurology. I have reservations about he meds anyway. I would like to see how Benjamin does without them now that he's in a different environment, but unfortunately they're meds that have to be weaned. Anyway, Dr. M advised us to contact the Perkins School for the Blind because he feels Benjamin could benefit from the infant/toddler program they have. I'll be calling them tomorrow!
The first two years of life are critical as far as brain development goes. I'm determined to do as much as I can, and take advantage of the great resources (such as the Perkins School) that are available to us.
Our wonderful opthamologist, who has been examining Benjamin's eyes since birth, said he's pleased with the structure of his eyes, but he is concerned about CVI and it's something we won't be able to know until later. Again, we have to wait and see. He does seem to think the problem could be the neurological meds Benjamin's on. We'll be discussing this with Neurology. I have reservations about he meds anyway. I would like to see how Benjamin does without them now that he's in a different environment, but unfortunately they're meds that have to be weaned. Anyway, Dr. M advised us to contact the Perkins School for the Blind because he feels Benjamin could benefit from the infant/toddler program they have. I'll be calling them tomorrow!
The first two years of life are critical as far as brain development goes. I'm determined to do as much as I can, and take advantage of the great resources (such as the Perkins School) that are available to us.
Sunday, September 26, 2010
September 27, 2010
Lately if Benjamin isn't sleeping he's crying. He had a rough couple of days last week. He had his flu shot and a few immunizations on Thursday and he was an absolute mess that night and the entire next day. I swear if he was hooked up to a monitor he would have been spelling all night. He's been a little better over the past few days, but definitely not the smiley baby we were getting used to.
We're extremely worried because he doesn't seem to be focusing as well anymore. I'm wondering if he can't see and this could be one of the reasons why he's more irritable lately. He used to love his mobile (he would actually track the animals as they spun around) and now we turn it on and he acts like he can't even see it. I'm afraid he has a condition called CVI or cerebral visual impairment. After researching, it appears to be commonly present in infants like Benjamin who suffer from PVL (periventricular leukomalacia). Basically his brain cannot send signals to his visual pathways. We have an appointment with opthamology on Thursday so hopefully they can give us some answers. We also have an appointment with neurology in a couple of weeks and my fear is if Benjamin is still irritable, they're going to want to increase the drugs.
I felt the need to update, but I really can't write anymore right now. We're emotionally drained.
We're extremely worried because he doesn't seem to be focusing as well anymore. I'm wondering if he can't see and this could be one of the reasons why he's more irritable lately. He used to love his mobile (he would actually track the animals as they spun around) and now we turn it on and he acts like he can't even see it. I'm afraid he has a condition called CVI or cerebral visual impairment. After researching, it appears to be commonly present in infants like Benjamin who suffer from PVL (periventricular leukomalacia). Basically his brain cannot send signals to his visual pathways. We have an appointment with opthamology on Thursday so hopefully they can give us some answers. We also have an appointment with neurology in a couple of weeks and my fear is if Benjamin is still irritable, they're going to want to increase the drugs.
I felt the need to update, but I really can't write anymore right now. We're emotionally drained.
Saturday, September 18, 2010
???
Does anyone know what day it is??? We've been home for awhile now and Benjamin seems to have his days and nights in check, but the rest of us don't!
He looks perfect, but in all honesty it's been hard to treat him like a normal little baby because of his neurological issues. A few days before we left the hospital we had a meeting with Benjamin's neuro team so we could have a better understanding of the new meds he's on and his condition in general. We were told that they are 100% sure he has cerebral palsy (although they can't officially diagnose him until he's 2) and they feel the type he has is spastic quadraplegia which, of course, is the most severe because all limbs are affected. We thought we had heard the worst, but this was just devastating. Every time we have to administer meds or set his feeding pump, we're constantly reminded of the struggles he's going to face.
As far as what we've been doing since he came home... we administer 8 different meds (17 total doses) between the hours of 6am and 9pm. He has to feed every 3 hours and we're doing almost exactly what they were doing in the hospital. He can nurse up to 2 times a day. Sometimes he does well, other times not so much. During the other feeds, we offer him a bottle and then what he doesn't take runs through the g-tube. If he's sleeping, we put everything through the g-tube.
He loves to be held and is getting spoiled rotten because the minute he cries, one of us runs right over to him and scoops him up because we still live in fear he's going to desat! He is sleeping in our room for probably the next few months and for a majority of the time we've slept with the light on because it was the only way I could tell he was breathing (my eyes would play tricks on me if the light was off). He does make some really strange noises in his sleep, like grunting sounds... if any of his night nurses are reading this... is this what he normally did?
We did make it outside for a walk today and I think he really enjoyed the fresh air! Hopefully the weather will stay like this for awhile so we can venture around the block a few more times.
He still has his fussy moments, but we get lots of smiles. Jadyn loves to make Benjamin smile and is an awesome big sister. I guess she's been talking about him quite a bit at school because all her friends and teachers knew he was coming home this week. She hasn't been able to go out much since he's been home, but she seems to understand and accept the fact that this is how it's going to be for awhile!
He looks perfect, but in all honesty it's been hard to treat him like a normal little baby because of his neurological issues. A few days before we left the hospital we had a meeting with Benjamin's neuro team so we could have a better understanding of the new meds he's on and his condition in general. We were told that they are 100% sure he has cerebral palsy (although they can't officially diagnose him until he's 2) and they feel the type he has is spastic quadraplegia which, of course, is the most severe because all limbs are affected. We thought we had heard the worst, but this was just devastating. Every time we have to administer meds or set his feeding pump, we're constantly reminded of the struggles he's going to face.
As far as what we've been doing since he came home... we administer 8 different meds (17 total doses) between the hours of 6am and 9pm. He has to feed every 3 hours and we're doing almost exactly what they were doing in the hospital. He can nurse up to 2 times a day. Sometimes he does well, other times not so much. During the other feeds, we offer him a bottle and then what he doesn't take runs through the g-tube. If he's sleeping, we put everything through the g-tube.
He loves to be held and is getting spoiled rotten because the minute he cries, one of us runs right over to him and scoops him up because we still live in fear he's going to desat! He is sleeping in our room for probably the next few months and for a majority of the time we've slept with the light on because it was the only way I could tell he was breathing (my eyes would play tricks on me if the light was off). He does make some really strange noises in his sleep, like grunting sounds... if any of his night nurses are reading this... is this what he normally did?
We did make it outside for a walk today and I think he really enjoyed the fresh air! Hopefully the weather will stay like this for awhile so we can venture around the block a few more times.
He still has his fussy moments, but we get lots of smiles. Jadyn loves to make Benjamin smile and is an awesome big sister. I guess she's been talking about him quite a bit at school because all her friends and teachers knew he was coming home this week. She hasn't been able to go out much since he's been home, but she seems to understand and accept the fact that this is how it's going to be for awhile!
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