I've totally been slacking on my blog. For all my daily checkers I apologize. I have been lazy with it, trying to keep up with the boys appointments and keeping my house clean. All is well. Gavin went to see a feeding specialist who recommended putting blenderized rice cereal in his bottles to see if it helped with his reflux, but alas it has not. It just takes him longer to eat, which just causes him to burn more calories then he is taking in. The boys also both had vision tests this week. Gabe got a good bill of health and Gavin is severely far sighted. The optomologist wants to give him another 6 months to "catch up" due to his brain damage. He thinks that he will make some improvement before then with being cross eyed as well. If not we will have to put him in super cute little tiny baby glasses. Ethan has said a few words! "drink," "go," "mama," are all his new favorites. We've even gotten one "thank you" out of him to date!
But I must go for now. My typing is waking up the little man. I promise to be back soon.
Friday, January 25, 2013
Saturday, January 19, 2013
Sorry it's been so long since I've updated you guys on the terrific trio (since bubs been with his mom a lot more lately.) We just tootin along. We have a lot coming up medically speaking. I had a consultation with our pediatrician about Gavin and Gabe. She believes Gavin has cerebral palsy, cut and dry. After examining Gabe and reading over our reports from our therapists, she also believes that with Gabe's muscle tightness in his trunk and upper body along with his brain cysts, he may also have a mild form of cp. So we have appointments at a hospital in STL in April with a pediatric neurologist that specializes in Periventricular leukomalacia and cerebral palsy in infants. Gavin also has appointments with a feeding team and a plastic surgeon regarding his submucous palate. ENT no longer handles palate issues I guess so we have a consult with a plastics dr Wednesday. Thursday both boys have vision tests and Friday hearing tests and occupational therapy. So we are busy little bees.
I am sitting here trying to finish writing this but I am just so totally exhausted. All the boys are asleep and that is where I'm headed! I will add more tomorrow.
Good bye for now.
I am sitting here trying to finish writing this but I am just so totally exhausted. All the boys are asleep and that is where I'm headed! I will add more tomorrow.
Good bye for now.
Friday, January 11, 2013
Everything at our home is in a state of constant change. Whether its purging toys, adding more appointments, new referrals and services, every day seems to be as unpredictable and busy as the next.
Gavin and Gabriel are growing like weeds. Gavin is 13lb 11oz and 24in long and Gabe is 14lb 3oz and 24.5in long. Gabe just went through his "5mo/3mo" growth spurt and Gav still has not.
Both the little guys have recently seen an orthotist and we received the diagnosis of moderate/severe torticollis and severe plagiocephaly. The recommended course of treatment- the dreaded cranial molding helmet. These helmets just be worn 23 hours a day except to wash their hair, helmets, and enough time to let them both thoroughly air dry. We go on 02/01 to get their scans for fabrication and then they should be delivered on 02/11. We will go and have a 4 hour appointment to have them "fitted." The upside is that the boys will cosmetically look symmetrical once they are finished and will have avoided further the side effects of the plagiocephaly.
Plagiocephaly can cause vision, hearing, dental, and eating issues. It can also impede mobility and cause uneven jaw growth. We have been referred to have the boys seems by both audiologists and optometrists. Due to their head shape, their eyes no longer align and move in sync. Both boys have one eye that is positioned/aligned to face their nose. It almost looks like one eye is always "crossed."
We have also increased Gavin's physical and occupational therapy sessions from 2x a month to 6x a month. He still sees physical therapy 2x a month but we are discussing bumping him up to weekly. We also saw our nutritionist today who is worried about Gav's eating and weight gain. During his suck, swallow, breath sequence he forgets to swallow. Every 2-3 tries he pauses and just allows the formula to sit in the back of his throat. Then when he goes to breath he is coughing and gagging. We had a swallow study done which ruled out the submucous cleft, but we still need to see an ENT to rule out any esophageal abnormalities. We are also being referred to a feeding team. Early intervention as a whole, all his therapists, believe Gavin would greatly benefit from being fully evaluated by a behavioral developmental pediatrician. We have been referred to one in Champain. So every month/every other month we will have to make the drive. He will still see our local pedi for well and sick baby visits though.
Gabe is doing well. Cooing, laughing, supported sitting, making eye contact, tracking and grasping objects. He is having no eating difficulties right now and is gaining weight like a champ. He just started to roll over from tummy to back. It's very sporadic and not completely coordinated yet but we are getting there. He is still doing physical and occupational therapy twice monthly. He too has to get a cranial molding helmet. His torticollis and plagiocephaly is actually more severe than Gav's. Because Gabe was the "stuck donor" in our TTTS, he was in the same position with his head turned under my ribs through our entire pregnancy and has sustained the head shape and neck position beyond. With therapy and the helmet it is something that can be overcome with persistent stretching and the help of the helmet.
Ethan is doing great! He is now jumping, sorting, stacking, putting together puzzles. At 16mo he is still not saying anything. Not one single word. He makes the "da" noise but does not say it directly to Tim like he's addressing him as "dada." We are trying to incorporate baby sign into our daily life now. Currently we are working on "eat, more, open, bathroom, bed." Hopefully as we sign and say the words he will start to more vocal. His receptive language is outstanding! He understands and responds so almost everything you say to him. He has a lot of babble/jargon so hopefully words will soon follow!
Xavier just started back up at school. He is doing great reading and is making a ton of friends. He has definitely grown and developed into a little man since the beginning of August. Tim and I couldn't be more proud. :)
I am exhausted. Tim is exhausted. All of these medical appointments are overwhelming and exhausted. I'm frustrated. No necessarily with our care but with how fractured and uncohesive it is. It feels like no one is communicating so I have to rely the messages of 10 other therapists and doctors to everyone at each appointment we have. It just feels so disconnected. Then we have all these people giving us unofficial cerebral palsy diagnoses for Gavin but our pediatrician has yet to even bring it up and when I do it is not taken seriously. I'm not sure if its because Gavin is only 5mo. Even with a diagnosis nothing treatment wise would really change. I just feel like it would give me peace of mind for everything that is going on with him to have a name.
I'm also ready to move. I'm frustrated with our lack of space and being on the second floor. We also need a working vehicle that can hold our entire family. it really sucks not trusting what you have to make it down the road, let alone 70- 150 miles to some of our appts. It does put a damper on us only having one income but even if I wanted to work I couldn't. Having two preemie infants, one with special needs, and a toddler makes that an impossibility. I know family always says "put them in daycare and apply here" but I can't. We literally have an appointment every single day! I have no idea how parents do this. Between OT, pt, st, orthotist, bd pedi, reg pedi, cardiologist, nuerologist, nutritionist, I seriously have NO time to clean my
House let alone work.
Well that's all for now. I have two screaming babies who just don't want to take their afternoon nap without a fight.
Gavin and Gabriel are growing like weeds. Gavin is 13lb 11oz and 24in long and Gabe is 14lb 3oz and 24.5in long. Gabe just went through his "5mo/3mo" growth spurt and Gav still has not.
Both the little guys have recently seen an orthotist and we received the diagnosis of moderate/severe torticollis and severe plagiocephaly. The recommended course of treatment- the dreaded cranial molding helmet. These helmets just be worn 23 hours a day except to wash their hair, helmets, and enough time to let them both thoroughly air dry. We go on 02/01 to get their scans for fabrication and then they should be delivered on 02/11. We will go and have a 4 hour appointment to have them "fitted." The upside is that the boys will cosmetically look symmetrical once they are finished and will have avoided further the side effects of the plagiocephaly.
Plagiocephaly can cause vision, hearing, dental, and eating issues. It can also impede mobility and cause uneven jaw growth. We have been referred to have the boys seems by both audiologists and optometrists. Due to their head shape, their eyes no longer align and move in sync. Both boys have one eye that is positioned/aligned to face their nose. It almost looks like one eye is always "crossed."
We have also increased Gavin's physical and occupational therapy sessions from 2x a month to 6x a month. He still sees physical therapy 2x a month but we are discussing bumping him up to weekly. We also saw our nutritionist today who is worried about Gav's eating and weight gain. During his suck, swallow, breath sequence he forgets to swallow. Every 2-3 tries he pauses and just allows the formula to sit in the back of his throat. Then when he goes to breath he is coughing and gagging. We had a swallow study done which ruled out the submucous cleft, but we still need to see an ENT to rule out any esophageal abnormalities. We are also being referred to a feeding team. Early intervention as a whole, all his therapists, believe Gavin would greatly benefit from being fully evaluated by a behavioral developmental pediatrician. We have been referred to one in Champain. So every month/every other month we will have to make the drive. He will still see our local pedi for well and sick baby visits though.
Gabe is doing well. Cooing, laughing, supported sitting, making eye contact, tracking and grasping objects. He is having no eating difficulties right now and is gaining weight like a champ. He just started to roll over from tummy to back. It's very sporadic and not completely coordinated yet but we are getting there. He is still doing physical and occupational therapy twice monthly. He too has to get a cranial molding helmet. His torticollis and plagiocephaly is actually more severe than Gav's. Because Gabe was the "stuck donor" in our TTTS, he was in the same position with his head turned under my ribs through our entire pregnancy and has sustained the head shape and neck position beyond. With therapy and the helmet it is something that can be overcome with persistent stretching and the help of the helmet.
Ethan is doing great! He is now jumping, sorting, stacking, putting together puzzles. At 16mo he is still not saying anything. Not one single word. He makes the "da" noise but does not say it directly to Tim like he's addressing him as "dada." We are trying to incorporate baby sign into our daily life now. Currently we are working on "eat, more, open, bathroom, bed." Hopefully as we sign and say the words he will start to more vocal. His receptive language is outstanding! He understands and responds so almost everything you say to him. He has a lot of babble/jargon so hopefully words will soon follow!
Xavier just started back up at school. He is doing great reading and is making a ton of friends. He has definitely grown and developed into a little man since the beginning of August. Tim and I couldn't be more proud. :)
I am exhausted. Tim is exhausted. All of these medical appointments are overwhelming and exhausted. I'm frustrated. No necessarily with our care but with how fractured and uncohesive it is. It feels like no one is communicating so I have to rely the messages of 10 other therapists and doctors to everyone at each appointment we have. It just feels so disconnected. Then we have all these people giving us unofficial cerebral palsy diagnoses for Gavin but our pediatrician has yet to even bring it up and when I do it is not taken seriously. I'm not sure if its because Gavin is only 5mo. Even with a diagnosis nothing treatment wise would really change. I just feel like it would give me peace of mind for everything that is going on with him to have a name.
I'm also ready to move. I'm frustrated with our lack of space and being on the second floor. We also need a working vehicle that can hold our entire family. it really sucks not trusting what you have to make it down the road, let alone 70- 150 miles to some of our appts. It does put a damper on us only having one income but even if I wanted to work I couldn't. Having two preemie infants, one with special needs, and a toddler makes that an impossibility. I know family always says "put them in daycare and apply here" but I can't. We literally have an appointment every single day! I have no idea how parents do this. Between OT, pt, st, orthotist, bd pedi, reg pedi, cardiologist, nuerologist, nutritionist, I seriously have NO time to clean my
House let alone work.
Well that's all for now. I have two screaming babies who just don't want to take their afternoon nap without a fight.
Monday, January 7, 2013
Another Christmas come and gone. Gavin and Gabriel were able to see a Christmas tree and stare at the pretty lights and enjoy the Commotion of opening gifts with everyone.
All the boys did really well as far as gifts go! Ethan's favorites by far are Grandma Lori's Thomas the Tank tent and Granny Jen and Papa Ryan's Sherif Woody doll with the pull string! I cannot begin to explain how many times I've heard "there's a snake in my boot," "this town ain't big enough for the two of us, no wait just kidding of course it is," and "hahaha that tickles," since Christmas Eve. The best part is that Woody has an off switch for when its bedtime! Ethan had slept with it for almost a week now.
Gavin and Gabes favorite gift is the crib soother and projector from Dustin, Lyndsey, and Graham. We haven't heard a peep out of them at bedtime since it was placed in their crib! :)
Gavin was evaluated by speech therapy on Friday. They thought he had an occult submucous cleft in his soft palate as well as a possibly structural abnormality in his esophagus. We had our swallow study and he shows now physical abnormalities and has no aspiration. His medical team has decided that his eating difficulties are due to poor muscle control from his PVL. We will continue to work with our speech therapist Christy and hopefully find a way to make eating more successful and comfortable. We also saw our orthotist today, Jackie. She diagnosed Gavin with severe plagiocephaly and his torticollis is now mild-moderate. If left untreated it can cause vision, breathing, hearing, eating, and mobility issues. The jaw will grow uneven. Their ear canals will be stretched and narrowed. It can cause eye placement and retinal issues. It can cause breathing issues due to disfigurement of the sinus cavity and placement of nose. It is also a cosmetic issue. So we have to get helmeted. They go 2/1 to get sized and will be fitted in 2/11. They will have to wear them 23 hours a day for a projected 4 months. They said insurance covering it is a toss up. Yes it contributes to their disability but they said its not always covered because most of the time they argue that its just cosmetic. So if not each helmet costs $2000. They said they can arrange payment plans but we are definitely stressing this expense on top of their nicu, pt, OT, st, cardiologist, neurologist copays and deductibles. They also again today said Gavin shows all the signs of cerebral palsy and asked if we've had an official diagnosis. I'm not sure where to go. I still haven't heard about our developmental pediatrician referral. I've called the pediatricians office to share our findings and see where we are on the referrals but no call back yet!
Gabe is now laughing and cooing up a storm. His range of motion in his next has improved so much but only with assistance. He still has a strong natural inclination to keep his head to the right. As you read before, gabe was also diagnose with severe plagiocephaly.
Ethan's doing great. He isn't saying any words yet besides dada. We are working on baby signing. It's a little late in the game to start, at 16mo, but we are hoping that associating the words with the hand signs will help him realize what it all means.
We are having a hard time taking the pacifier away from him. Currently he is only getting it at bedtime but somehow always seems to find one. As he's gotten older I just blamed the mystery of the missing pacifier on apartment. Just like the dryer eats missing socks, our apartment eats pacifiers, and thermometers, and nose suckers. But- it was Ethan. He hid them in super secret hiding spots and is now beginning to bring them to the surface. It's like he instinctually knew that one day we would phase them out so he needed a back up. The other morning he woke up with a preemie mam in his mouth. Granted he could've put the whole thing in his mouth but instead sucked on it correctly, looking like a geisha with those tiny red lips.
Other then that here are some pictures! Thank you all for everything :)
All the boys did really well as far as gifts go! Ethan's favorites by far are Grandma Lori's Thomas the Tank tent and Granny Jen and Papa Ryan's Sherif Woody doll with the pull string! I cannot begin to explain how many times I've heard "there's a snake in my boot," "this town ain't big enough for the two of us, no wait just kidding of course it is," and "hahaha that tickles," since Christmas Eve. The best part is that Woody has an off switch for when its bedtime! Ethan had slept with it for almost a week now.
Gavin and Gabes favorite gift is the crib soother and projector from Dustin, Lyndsey, and Graham. We haven't heard a peep out of them at bedtime since it was placed in their crib! :)
Gavin was evaluated by speech therapy on Friday. They thought he had an occult submucous cleft in his soft palate as well as a possibly structural abnormality in his esophagus. We had our swallow study and he shows now physical abnormalities and has no aspiration. His medical team has decided that his eating difficulties are due to poor muscle control from his PVL. We will continue to work with our speech therapist Christy and hopefully find a way to make eating more successful and comfortable. We also saw our orthotist today, Jackie. She diagnosed Gavin with severe plagiocephaly and his torticollis is now mild-moderate. If left untreated it can cause vision, breathing, hearing, eating, and mobility issues. The jaw will grow uneven. Their ear canals will be stretched and narrowed. It can cause eye placement and retinal issues. It can cause breathing issues due to disfigurement of the sinus cavity and placement of nose. It is also a cosmetic issue. So we have to get helmeted. They go 2/1 to get sized and will be fitted in 2/11. They will have to wear them 23 hours a day for a projected 4 months. They said insurance covering it is a toss up. Yes it contributes to their disability but they said its not always covered because most of the time they argue that its just cosmetic. So if not each helmet costs $2000. They said they can arrange payment plans but we are definitely stressing this expense on top of their nicu, pt, OT, st, cardiologist, neurologist copays and deductibles. They also again today said Gavin shows all the signs of cerebral palsy and asked if we've had an official diagnosis. I'm not sure where to go. I still haven't heard about our developmental pediatrician referral. I've called the pediatricians office to share our findings and see where we are on the referrals but no call back yet!
Gabe is now laughing and cooing up a storm. His range of motion in his next has improved so much but only with assistance. He still has a strong natural inclination to keep his head to the right. As you read before, gabe was also diagnose with severe plagiocephaly.
Ethan's doing great. He isn't saying any words yet besides dada. We are working on baby signing. It's a little late in the game to start, at 16mo, but we are hoping that associating the words with the hand signs will help him realize what it all means.
We are having a hard time taking the pacifier away from him. Currently he is only getting it at bedtime but somehow always seems to find one. As he's gotten older I just blamed the mystery of the missing pacifier on apartment. Just like the dryer eats missing socks, our apartment eats pacifiers, and thermometers, and nose suckers. But- it was Ethan. He hid them in super secret hiding spots and is now beginning to bring them to the surface. It's like he instinctually knew that one day we would phase them out so he needed a back up. The other morning he woke up with a preemie mam in his mouth. Granted he could've put the whole thing in his mouth but instead sucked on it correctly, looking like a geisha with those tiny red lips.
Other then that here are some pictures! Thank you all for everything :)
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