We had our fetal MRI for baby brother last week and everything looks great. His brain is developing normal for his gestational age (20 weeks). It feels like we can breathe a sigh of relief, but we won't be completely relieved until we have this little boy in our arms. Even though we are halfway through this pregnancy, it still feels like a ways away.
River is doing somewhat better. He is still waking frequently at night ~ anwhere between 2 and 4+ night wakings (I lose track after 4). Most of them are pretty quick, requiring a diaper change, a pacifier, some soothing, others last longer. Either way they are disruptive to our night, and make it difficult to feel energetic during the day. I'm applying for more personal care hours for this reason and everything else we're dealing with. It will be nice to have some extra help when we have a string of exhausting nights. Unfortunately, it's likely that my request for more hours will get declined and I'll have to appeal. I'm already collecting letters from River's doctors in case this happens.
We put up a christmas tree, a few ornaments but mostly covered it with white lights for River's entertainment. As I suspected he loves it. He's easily transfixed, eventually scooting his way underneath the tree. I guess he knows what a gift he is for his mommies.
Tuesday, December 15, 2009
Friday, December 4, 2009
Sleepless
The day after Thanksgiving River came down with a stomach bug. Anything we put into his tube just came right back out, including pedialyte. Just when I was getting concerned with his hydration status, he started tolerating small amounts of fluid. Julia and I spent the weekend soothing, rocking and on constant vigil. Monday he seemed to be feeling better, but he was still waking up frequently at night in pain. He was so clearly tired, but something was keeping him from sleeping restfully. So Julia and I resorted to taking turns sleeping in bed with him (otherwise we'd be at his crib every 10 minutes at times) while the other slept in the guest bedroom. Still it wasn't ideal. None of us were getting any good sleep. Thursday of this week we had an appointment in Boston with his epileptologist. I was at the end of my rope and was desperately hoping that this doctor (also a sleep specialist) would have a magic cure. He made some suggestions for his medications which didn't seem hopeful at the time - I couldn't imagine one more night like the last four, but a sushi lunch calmed my nerves and brought reason to my sleepless brain. So here are the changes we'll be implementing over the next few weeks:
1) Increase his melatonin from 1mg to 3mg.
2) Restart iron at a small enough dose to help with his nighttime twitching without constipating him.
3) Increase his banzel for his seizures. The doc wants to exhaust the possibility that this medication won't work before moving onto something else. This means more nausea and vomiting temporarily.
4) Continue with reglan because of the vomiting from #3.
5) Restart his periactin for gastric emptying. We had stopped this temporarily because we learned that his body can become resistant to it's effects and needs to cycle on and off of it every few weeks. Since he's been off for a week, we were able to restart yesterday.
6) Meet with his GI to reevaluate his reflux and find out if his fundoplication is still working.
7) Initiate a consult to evaluate him for the ketogenic diet (for seizures) in case the banzel doesn't work.
I always respond well to a plan and it feels like we have one, not only for his seizures, but also his sleepless nights and possible relationship to his digestive discomforts. The other perk is that he slept through last night, not waking up until 5am. I am ecstatic.
The other news is that we had River's bi-annual goal meeting this week. None of his goals changed significantly since his progress has been so inconsistent, however we did discuss his transition from early intervention to the school system which will happen when he's three. There a few options that we hadn't known of and will look into for the coming year. He'll need a lot of support in a preschool environment so we are working hard at having those in place ahead of time.
1) Increase his melatonin from 1mg to 3mg.
2) Restart iron at a small enough dose to help with his nighttime twitching without constipating him.
3) Increase his banzel for his seizures. The doc wants to exhaust the possibility that this medication won't work before moving onto something else. This means more nausea and vomiting temporarily.
4) Continue with reglan because of the vomiting from #3.
5) Restart his periactin for gastric emptying. We had stopped this temporarily because we learned that his body can become resistant to it's effects and needs to cycle on and off of it every few weeks. Since he's been off for a week, we were able to restart yesterday.
6) Meet with his GI to reevaluate his reflux and find out if his fundoplication is still working.
7) Initiate a consult to evaluate him for the ketogenic diet (for seizures) in case the banzel doesn't work.
I always respond well to a plan and it feels like we have one, not only for his seizures, but also his sleepless nights and possible relationship to his digestive discomforts. The other perk is that he slept through last night, not waking up until 5am. I am ecstatic.
The other news is that we had River's bi-annual goal meeting this week. None of his goals changed significantly since his progress has been so inconsistent, however we did discuss his transition from early intervention to the school system which will happen when he's three. There a few options that we hadn't known of and will look into for the coming year. He'll need a lot of support in a preschool environment so we are working hard at having those in place ahead of time.
Sunday, November 22, 2009
Standers
We have been trying out various standers for River over the last several months. This piece of equipment will help him with weightbearing, and offer him another position to play in. He prefers to play flat on his back, but if he's in a good mood, and in the right stander, it is a wonderful alternate position.
This is a supine stander, which he seems to do the best in so far.
This is a prone stander, which he clearly does not care for, probably too much pressure on his tummy. His tendency to throw his head back also makes this not an ideal setup.
This is a supine stander, which he seems to do the best in so far.
This is a prone stander, which he clearly does not care for, probably too much pressure on his tummy. His tendency to throw his head back also makes this not an ideal setup.
Expecting a spring delivery
Most of you know about our exciting news that River is going to be a big brother, and we are going to be sleepless, overjoyed, overwhelmed, in-love mommies again. Now that I write that I realize it sounds a lot like who we are now... well, then it will be times two. Are we crazy?! I do believe so.
This is our little pierogi at 15 weeks.
This is our little pierogi at 15 weeks.
Halloween, finally...
Halloween was rainy so we stayed home and handed out candy. We took pictures the days before and after so that River could show off his cute lion costume. We're still practicing the roar...
Precious...
Precious...
Tuesday, October 27, 2009
Fall 2009 Updates
Life has been busy and I have been distracted enough to neglect River's blog, but a few friends have recently asked about River's blog and so it's definitely time for some updates. Fortunately everything has been going relatively well for River so there hasn't been a lot to write about. But I can always find something to say about my sweet son..
River now has 16 erupted teeth, not necessarily fully in, but definitely broken through the skin. This includes one set of molars (which he has had for awhile) and everything in between. This explains some of River's irregular fussiness, including random middle-of-the night screaming. Motrin has become our best friend. But it feels like we're on the other side, until his next molars start working through. He was supposed to have his first dentist appointment this week, but I decided to put it off until next year as things seem to be going just fine in the oral department and we just don't need another appointment.
We're still battling seizures, but we seem to be staying ahead of them at the moment. In addition to the Keppra we've added a new medication called Banzel. It's newly approved by the FDA although it's been used around the world for several years for seizures similar to River's. We are hopeful that it will lessen the seizures, as we are running out of low side-effect medications and may have to consider more invasive treatments if they continue to worsen. The seizures themselves are still considered "tonic seizures" and are followed by a short period of laughing - a result of the disinhibition of the brain from the seizure activity. The seizures seem to be worse with fatigue or illness, and especially when River gets a vaccination. Which brings me to another topic... immunizations.
We've decided to start slowly immunizing River. We've noticed that he is much fussier, and more prone to seizures after the shot so we're only doing one at a time. We're starting with the seasonal flu shot and Dtap. It will take us awhile to get caught up, but it feels like it's a good time to get started. If he seems to have more serious reactions we'll reconsider our decision. Most schools require vaccinations, including Cedar Crest, a local residential facility for children with disabilities, where we'd like to send River for occasional overnight respite care at some point in the future.
Speaking of respite, River spent last Saturday night, all night, with good friends of ours - Steve, Willow, Nathaniel and Elliot (and Talia who passed away last year). Julia and I went down to Northampton for the evening and then came home to sleep THE WHOLE NIGHT. When I woke up at 7:30 feeling rested, I forced myself back to sleep just because I could. It was a very special treat for us, although we missed River a lot and we're happy to see him in the morning.
Check back soon as I'll try to update more frequently. Perhaps some Halloween pictures next week!
And of course some pictures...
River naps in his swing on one of our last summer days. Check out those lips!
Trying on some of his hand-me-down winter clothes... too funny.
River's 4th haircut... before...
and after...
Post bath glow.
Bundled boy and his new friend Brittany.
Showing off his chuck taylors, and his kung fu move.
River now has 16 erupted teeth, not necessarily fully in, but definitely broken through the skin. This includes one set of molars (which he has had for awhile) and everything in between. This explains some of River's irregular fussiness, including random middle-of-the night screaming. Motrin has become our best friend. But it feels like we're on the other side, until his next molars start working through. He was supposed to have his first dentist appointment this week, but I decided to put it off until next year as things seem to be going just fine in the oral department and we just don't need another appointment.
We're still battling seizures, but we seem to be staying ahead of them at the moment. In addition to the Keppra we've added a new medication called Banzel. It's newly approved by the FDA although it's been used around the world for several years for seizures similar to River's. We are hopeful that it will lessen the seizures, as we are running out of low side-effect medications and may have to consider more invasive treatments if they continue to worsen. The seizures themselves are still considered "tonic seizures" and are followed by a short period of laughing - a result of the disinhibition of the brain from the seizure activity. The seizures seem to be worse with fatigue or illness, and especially when River gets a vaccination. Which brings me to another topic... immunizations.
We've decided to start slowly immunizing River. We've noticed that he is much fussier, and more prone to seizures after the shot so we're only doing one at a time. We're starting with the seasonal flu shot and Dtap. It will take us awhile to get caught up, but it feels like it's a good time to get started. If he seems to have more serious reactions we'll reconsider our decision. Most schools require vaccinations, including Cedar Crest, a local residential facility for children with disabilities, where we'd like to send River for occasional overnight respite care at some point in the future.
Speaking of respite, River spent last Saturday night, all night, with good friends of ours - Steve, Willow, Nathaniel and Elliot (and Talia who passed away last year). Julia and I went down to Northampton for the evening and then came home to sleep THE WHOLE NIGHT. When I woke up at 7:30 feeling rested, I forced myself back to sleep just because I could. It was a very special treat for us, although we missed River a lot and we're happy to see him in the morning.
Check back soon as I'll try to update more frequently. Perhaps some Halloween pictures next week!
And of course some pictures...
River naps in his swing on one of our last summer days. Check out those lips!
Trying on some of his hand-me-down winter clothes... too funny.
River's 4th haircut... before...
and after...
Post bath glow.
Bundled boy and his new friend Brittany.
Showing off his chuck taylors, and his kung fu move.
Monday, September 7, 2009
EEG Pictures
Pictures from our stay at Boston Children's Hospital...
Immediately after the application of the electrodes. Not a happy boy.
Perking up with the help of Pip the Penguin.
And River gets a new head wrap.
Except this wrap is not much better. Eventually they took the wrap off all together and the electrodes stayed attached with all the glue they had applied.
After 18 hours they had gathered enough information and River gets his electrodes off. A very happy boy!
Immediately after the application of the electrodes. Not a happy boy.
Perking up with the help of Pip the Penguin.
And River gets a new head wrap.
Except this wrap is not much better. Eventually they took the wrap off all together and the electrodes stayed attached with all the glue they had applied.
After 18 hours they had gathered enough information and River gets his electrodes off. A very happy boy!
Wednesday, September 2, 2009
Early discharge!
We just heard the news that they analyzed River's EEG and found 13 "events" in the 18 hours recorded so far. We were commended for correctly identifying (pushing a button) them as they happened. And they are indeed seizures, called tonic seizures. These are similar to his initial diagnosis of seizures, except with more frequency and lasting longer (10-52 seconds), and more evident to anyone who is with him at the time. So they are sending us home with a plan to slowly increase his current seizure medication (Keppra). We'll also keep a seizure log and follow up with the epileptologist (I love saying this word) in 4-6 weeks. There are a few more boring details but I'll
It's 2pm now - we'll be lucky if we get out of here by 4pm. I probably won't be getting my nap. It's good to have realistic expectations.
**Update: we made it out by 3:30 AND I got a short nap on the drive to Worcester! Cape Cod here we come!
It's 2pm now - we'll be lucky if we get out of here by 4pm. I probably won't be getting my nap. It's good to have realistic expectations.
**Update: we made it out by 3:30 AND I got a short nap on the drive to Worcester! Cape Cod here we come!
Children's Hospital EEG
Most of you know we're at Children's Hospital in Boston for this long awaited monitoring for seizures. The plan is to monitor him for 2 days and 2 nights and be discharged Thursday morning when we'll drive to Provincetown for some much needed R&R. Our secret hope is that they'll have enough data by this afternoon to discharge us this evening so that we can sleep in a normal bed (at Auntie Robin's) and get some normal sleep. Last night was pretty horrendous. River slept well from 8 to midnight, then woke up pretty upset, likely because he has 25 electrodes glued to his head. After some motrin and tylenol he finally settled only to wake an hour later wide awake and ready to play (babbling, squirming, etc.). Julia and I took turns in the bed with him, mostly being kicked while we tried to shoosh him back to sleep. So we're all hanging out in our comfiest clothes, trying to catch up on sleep with some occasional bad TV and blog updating.
Thursday, August 27, 2009
Wednesday, August 19, 2009
Laughing Seizures?
I just updated our appointment list for the next few months and realized that I should update River's fans with the latest medical news. We think River has been having more seizures. However, these abnormal, involuntary movements do not resemble stereotypical seizures. They usually begin with a startle with his arms extended, and his eyes suddenly look up or to the left for a few seconds while he is silent, followed by his head turned sharply to the left and him smiling, or even laughing for 10-20 seconds. I used to think it was a cute laugh but now that it happens between 5 and 10 times a day I find it less entertaining. Under advisement of the neurologist, we've increased his Keppra with no real improvement. Next we'll do an EEG to find out if they really are seizures and how to treat them.
So the good news is that they aren't screaming seizures...
So the good news is that they aren't screaming seizures...
Sunday, August 9, 2009
Letting go of dreams
This is a post from one of my blogging friends, Ellen. Well, she probably doesn't even know I exist but since I check her blog so often, I feel like I know her. Here she writes about letting go of dreams and making new ones. The grief process can be so isolating, and I'm not always able to effectively share what it feels like, but I think Ellen does a nice job of expressing it.
http://www.5minutesforspecialneeds.com/1554/letting-go-of-dreams-for-your-child-building-new-ones/trackback/
http://www.5minutesforspecialneeds.com/1554/letting-go-of-dreams-for-your-child-building-new-ones/trackback/
1st Canoe Ride (pictures coming soon)
Ever since River was born we have been wanting to take him out in the canoe. An infant PFD (personal flotation device) was one of our first purchases as expectant parents. But up until now the task of taking him in the canoe had been too daunting. Although he loves water, we couldn't predict how he'd react to the canoe. And where would he sit while Julia and I paddled? He can't sit unsupported and is often times happy only when lying down. So with the help of our good friend Chris (and honorable auntie), we geared up for a canoe ride on the Meadows. While Julia and Chris paddled, I sat in the middle holding River, until he became uncomfortable upright, and I was able to lay him down on a blanket in the middle of the canoe. While it wasn't my most relaxing canoe ride, I would consider it highly successful, and a wonderful way to enjoy a summer evening.
Thursday, July 16, 2009
Exploring the ocean
Here we are at the Jersey Shore. We were lucky to have one day when the water wasn't frigid. I wouldn't say he loved this experience, but he did tolerate it nicely. It's a huge improvement from last year when he slept in the tent the entire time. I'm thinking we'll be jumping waves together by this time next year. :)
Wednesday, July 15, 2009
Tuesday, July 14, 2009
Random Vacation Photos
I have some wonderful videos to post, however these are quicker and provide instant gratification until I can find the time, and patience to upload the videos.
Hanging out in the hammock.
Discovering that River LOVES being swung (high) in the hammock.
More irresistible smiles!
Discovering the ocean! These blissful moments lasted for about 10 minutes before he decided, rather adamantly, that he'd had enough. You'll love the video.
Hanging out in the hammock.
Discovering that River LOVES being swung (high) in the hammock.
More irresistible smiles!
Discovering the ocean! These blissful moments lasted for about 10 minutes before he decided, rather adamantly, that he'd had enough. You'll love the video.
Family Photo
We are back from the Jersey Shore, the rested, relaxed feeling now replaced with exhaustion from our regular routine. And, I have a gazillion photos to upload since we did not have internet at the shore. Every year we take a family photo. This was the fun photo this year. More to come.
Back row: Cousin Leah and BF/sex slave Jared, Sister Katra, Mom Wendy (aka grandmommy), Cousin Melissa (lives in Japan), Aunt Ilene, Julia, River, Moi
Front row: Grandma Bunny (with a tight hold on her champagne glass) and Grandpa Dick. Married 60 years next year!
Back row: Cousin Leah and BF/sex slave Jared, Sister Katra, Mom Wendy (aka grandmommy), Cousin Melissa (lives in Japan), Aunt Ilene, Julia, River, Moi
Front row: Grandma Bunny (with a tight hold on her champagne glass) and Grandpa Dick. Married 60 years next year!
Saturday, June 27, 2009
A fabulous day
We've been using our Saturday morning babysitter time for bike rides. Today we rode out to Green River, where we used to live BR (before River). Not only was it very nostalgic, but it was exhilarating to be climbing such wonderful hills. I loved it. It also was nice to sport my new biking clothes (matching shirt, socks and gloves). I didn't think I like pink, but I swear it makes me go faster. Here's a picture.
Then we had a hot tub with our dear fish, I mean boy. He likes the water so much that I sometimes can't tell the difference. Here he is in his floatie from his Auntie Robin, rigged with a foam noodle for more support. It really did the trick.
Then we had a hot tub with our dear fish, I mean boy. He likes the water so much that I sometimes can't tell the difference. Here he is in his floatie from his Auntie Robin, rigged with a foam noodle for more support. It really did the trick.
Sunday, June 14, 2009
River's "Little Room"
Someone at a support group encouraged us to take frequent videos of River to better see his progress. In the moment each milestone seems so small, but many moments together add up to more noticeable progress. So here is one such video which I captured. Julia created this Little Room for River's sensory development. I've also set up a switch attached to the red lights... I think he might be getting the concept, but he still needs more practice. Once he grasps cause and effect we can teach him how to use switches for all sorts of communication.
Tag Sale!
We decided to hold a yard sale rather than donating our leftovers to the thrift store, or leaving it out on the sidewalk - both very effective by the way.
We ended up making a lot of money - more than enough to replace Julia's Ipod that she dropped in the toilet. And it was fun to sell things, to visit with the neighborhood, and to see our used, unwanted items go to people who could use them. We also snapped some pictures of the cutie boy.
Just plain cute!
Julia worked very hard... taking a little rest here.
As usual, River was much happier without clothes on.
We ended up making a lot of money - more than enough to replace Julia's Ipod that she dropped in the toilet. And it was fun to sell things, to visit with the neighborhood, and to see our used, unwanted items go to people who could use them. We also snapped some pictures of the cutie boy.
Just plain cute!
Julia worked very hard... taking a little rest here.
As usual, River was much happier without clothes on.
Friday, June 12, 2009
June updates
Today I spent some time with Mary and River. He is working on assisted rolling. From his back we position his limbs, turn his hips and he follows through with his upper body. After a day of practicing he seems to be initiating this movement more frequently. Tonight I helped him turn onto his side, left the room to get his dinner ready, and came back to him on his stomach. And he seemed to be happy to be there. He typically detests belly time, and is not shy about expressing this. So it feels like a lot of improvement is happening. His new babysitters are a big part of this, especially as they spend more time with Mary learning how to support his development. Caroline and Anna divide up the week, while Meghan, Julianna and Susannah fill in on the evenings and weekends. It is quite a team!
Sleep is better, much better. We are not using the oxygen or the pulse oximeter, but are keeping it around for when he gets sick. He also gets flonase nightly (an intranasal steroid) Everyone is sleeping better!
The vegetable garden is doing well -- peas, tomatoes, peppers, and lots of lettuce are all very happy. I've just planted green beans, and am going to add squash and pumpkins shortly. The flower garden out front is still not flourishing. I haven't been able to spend as much time planning and supporting it's growth. So I mostly admire other gardens lovingly while I think about what I might do next year.
We don't have any other medical appointments scheduled for many months. We love visiting with Julia's family, and the luxuries of Boston (restaurants, museums, shopping when we can afford it), however it takes us away from our home, which we love.
I'll try to take more pictures of the punky boy... his hair is out of control and I'm thinking another haircut will be coming up soon.
Sleep is better, much better. We are not using the oxygen or the pulse oximeter, but are keeping it around for when he gets sick. He also gets flonase nightly (an intranasal steroid) Everyone is sleeping better!
The vegetable garden is doing well -- peas, tomatoes, peppers, and lots of lettuce are all very happy. I've just planted green beans, and am going to add squash and pumpkins shortly. The flower garden out front is still not flourishing. I haven't been able to spend as much time planning and supporting it's growth. So I mostly admire other gardens lovingly while I think about what I might do next year.
We don't have any other medical appointments scheduled for many months. We love visiting with Julia's family, and the luxuries of Boston (restaurants, museums, shopping when we can afford it), however it takes us away from our home, which we love.
I'll try to take more pictures of the punky boy... his hair is out of control and I'm thinking another haircut will be coming up soon.
Tuesday, June 2, 2009
Prunes!
Since River had a successful swallow study (he didn't aspirate) we have reintroduced puree feedings. So far he has tried sweet potatoes, apple sauce, pears, mangoes, carrots, peaches, apricots and prunes. Here are some pictures of River enjoying prunes...
A little blurry, but well worth posting...
Happy Boy!
A little blurry, but well worth posting...
Happy Boy!
Tuesday, May 26, 2009
Struggles
How can I possibly keep up with all of the important details of our lives? How do I know what is important? What do you want to read about? What do I want to write about? How come I feel badly when I haven't blogged in weeks?
This evening's struggle is about intervention. I've always considered myself a low-intervention sort of person. I believe in birth with little or no intervention when possible. Wearing makeup means Burts Bees chapstick, I drive an older vehicle, believe that wooden spoons and car keys are adequate toys for a baby. So how do I find myself in a place where I call a doctor every time River looks, moves, cries, breathes, eats differently than what we are used to? If there is a test that might improve his comfort or development I schedule it. A medicine that might improve his quality of life, I want it prescribed. I fight for the latest therapies and equipment. His medications number 9 or more, his doctors and therapists plentiful. How did I end up here?
This struggle has to do with his apnea... and what we can do, or should do as his parents. As the people who love him most, who want so much for him, yet also need out sanity. So does it make sense to have him hooked to a monitor which beeps loudly each time his oxygen levels drop? To which we jump out of bed to make sure that he is okay (which he is)? How about a huge oxygen concentrator which can be heard throughout the entire house? Not to forget his feeding tube which feeds him continuously throughout the night, and may need to be unhooked periodically to relieve the gas in his belly. Nothing about this feels normal.
How do I balance my desire for River to be well, with our needs for a decent night's sleep, with River's needs for some level of normalcy?
This evening's struggle is about intervention. I've always considered myself a low-intervention sort of person. I believe in birth with little or no intervention when possible. Wearing makeup means Burts Bees chapstick, I drive an older vehicle, believe that wooden spoons and car keys are adequate toys for a baby. So how do I find myself in a place where I call a doctor every time River looks, moves, cries, breathes, eats differently than what we are used to? If there is a test that might improve his comfort or development I schedule it. A medicine that might improve his quality of life, I want it prescribed. I fight for the latest therapies and equipment. His medications number 9 or more, his doctors and therapists plentiful. How did I end up here?
This struggle has to do with his apnea... and what we can do, or should do as his parents. As the people who love him most, who want so much for him, yet also need out sanity. So does it make sense to have him hooked to a monitor which beeps loudly each time his oxygen levels drop? To which we jump out of bed to make sure that he is okay (which he is)? How about a huge oxygen concentrator which can be heard throughout the entire house? Not to forget his feeding tube which feeds him continuously throughout the night, and may need to be unhooked periodically to relieve the gas in his belly. Nothing about this feels normal.
How do I balance my desire for River to be well, with our needs for a decent night's sleep, with River's needs for some level of normalcy?
Tuesday, May 5, 2009
Sleep Study Pics
Here are a few pics from River's sleep study. He was sleeping when they started applying the leads.
And then he woke up to have all these wires attached including a sensor to detect whether he was breathing through his mouth or nose.
But River was a champ. He slept through the whole night until they woke him up at 6am. And of course that made him very unhappy!
And then he woke up to have all these wires attached including a sensor to detect whether he was breathing through his mouth or nose.
But River was a champ. He slept through the whole night until they woke him up at 6am. And of course that made him very unhappy!
Monday, May 4, 2009
chair pictures
Here are some recent pictures I took of River in his new chair. Each day he is getting more comfortable in it. In the first picture you can see his toy bar above the tray where we can hang fun, shiny, noisy toys. The chair is in the lowest setting here, at Eli level.
The chair is is in the highest setting here, and the toy bar is gone. The chair provides just enough hip, trunk, and lower body support so that River can use his energy on his vision and reaching.
The chair is is in the highest setting here, and the toy bar is gone. The chair provides just enough hip, trunk, and lower body support so that River can use his energy on his vision and reaching.
Friday, May 1, 2009
Sleep Study Results
Whew, feels like a lot has been happening. We had the sleep study Sunday night which we've since learned did show some desaturations with shallow breathing, and intervention is recommended. Just when I thought we had all our ducks in a row, one of them gets out of line! And so we have another appointment. It starts with an ENT (ears, nose, throat) to see if taking out his tonsils and adenoids will be beneficial. If that' s not a possibility we'll explore the possibility of using a mask to sleep. Now that I know that he may not be getting enough oxygen at night, I am more nervous to sleep, especially when I hear his breathing pattern changing. Our appointment is in two weeks so I'll try to stay calm until then.
We also got River's chair on Monday. It's beautiful, and very intense looking all in one. It is taking some getting used to so we're introducing it to River for a short time each day.
And today we are on our way out of town to a conference at the Perkins School for the Blind called "Taking Care of Our Children... Taking Care of Ourselves." Perfect! I am very excited to attend this, as well as meet other parents of children with special needs. One of River's aunties is joining us for what should be a very informative presentation.
Pictures coming soon!
We also got River's chair on Monday. It's beautiful, and very intense looking all in one. It is taking some getting used to so we're introducing it to River for a short time each day.
And today we are on our way out of town to a conference at the Perkins School for the Blind called "Taking Care of Our Children... Taking Care of Ourselves." Perfect! I am very excited to attend this, as well as meet other parents of children with special needs. One of River's aunties is joining us for what should be a very informative presentation.
Pictures coming soon!
Thursday, April 23, 2009
A picture!
I was sad that I didn't have a picture to attach to the previous posts. I'm updating my blog at work (shhhh). But then I found this cute, but tiny picture on my computer. Can you see it?
Measurements
River's weight is down some, probably due to being sick several times last month. Since starting the new medication he seems to be tolerating his formula better. He'll be weighed again in two weeks.
20 pounds, 15 ounces
30 3/4 inches (getting long!)
20 pounds, 15 ounces
30 3/4 inches (getting long!)
Catching up
It feels like a long time since I've written. Perhaps it is because we've had so many appointments since my last posting. As Christa pointed out recently, we need a real time blog narration. Some sort of direct line from my brain to the blog. The act of writing is so time consuming, and so much is lost when I am unable to record the moments as they are happening.
Friday we took River to a new GI, a motility specialist at Children's Hospital who sees tons of kids with g-tubes and special needs. We were seeking advice on the occasional bouts of retching, which seems to happen more frequently when River is sick. The doc confirmed that it's not our imagination - his digestion does shut down when he is sick, and it takes him much longer than typical to recover from even a simple cold. From experience we have learned that switching him from formula to pedialyte minimizes the retching during illness, until he starts feeling better, and his digestion picks up again. At the doc's recommendation we have added another medication, Periactin, to help with his motility, which we can give more frequently when he is sick. Finally, and probably the most valuable part of the visit, was the doc's perspective that the retching, and very sensitive tummy, is very normal. It may get better, it may not, and there are more options (with more side effects) if the problem continues. He felt we are doing everything appropriate, including our upcoming swallow study, and made himself available for consultation at any point in the future.
We stayed over Friday night with Julia's family which is always great. It is close enough to Boston to make the trip tolerable, and it's wonderful to spend time with her sisters and nieces. River seems to love it too!
After driving back to Vermont Saturday, we drove back to Worcester Monday night, where he slept through the night for the first time in a loooong time! We had an appointment Tuesday morning with a different orthopedist. The 2nd opinion was very similar to the first opinion, good to be consistent. With most of the day left, we decided to venture over to the New England Aquarium. I had dreamy visions of a serene walk through the dimly lit aquarium, perhaps he'd even enjoy the bubbles or the penguins. However, my visions were quickly crushed by the realization that it was school vacation week for the entire northeast! But I kept my cool and actually enjoyed some of the aquarium. River did not enjoy it so much. It felt like he screamed the entire day, even though Julia assures me he took a short nap while we were looking at the sharks. The rest of the time he was flat out pissed off. Right up until we got into the car to go home. I am not kidding. He smiled so much on the way home that I thought his smiler was going to break. Go figure. He's our weirdo and we love him.
Friday we took River to a new GI, a motility specialist at Children's Hospital who sees tons of kids with g-tubes and special needs. We were seeking advice on the occasional bouts of retching, which seems to happen more frequently when River is sick. The doc confirmed that it's not our imagination - his digestion does shut down when he is sick, and it takes him much longer than typical to recover from even a simple cold. From experience we have learned that switching him from formula to pedialyte minimizes the retching during illness, until he starts feeling better, and his digestion picks up again. At the doc's recommendation we have added another medication, Periactin, to help with his motility, which we can give more frequently when he is sick. Finally, and probably the most valuable part of the visit, was the doc's perspective that the retching, and very sensitive tummy, is very normal. It may get better, it may not, and there are more options (with more side effects) if the problem continues. He felt we are doing everything appropriate, including our upcoming swallow study, and made himself available for consultation at any point in the future.
We stayed over Friday night with Julia's family which is always great. It is close enough to Boston to make the trip tolerable, and it's wonderful to spend time with her sisters and nieces. River seems to love it too!
After driving back to Vermont Saturday, we drove back to Worcester Monday night, where he slept through the night for the first time in a loooong time! We had an appointment Tuesday morning with a different orthopedist. The 2nd opinion was very similar to the first opinion, good to be consistent. With most of the day left, we decided to venture over to the New England Aquarium. I had dreamy visions of a serene walk through the dimly lit aquarium, perhaps he'd even enjoy the bubbles or the penguins. However, my visions were quickly crushed by the realization that it was school vacation week for the entire northeast! But I kept my cool and actually enjoyed some of the aquarium. River did not enjoy it so much. It felt like he screamed the entire day, even though Julia assures me he took a short nap while we were looking at the sharks. The rest of the time he was flat out pissed off. Right up until we got into the car to go home. I am not kidding. He smiled so much on the way home that I thought his smiler was going to break. Go figure. He's our weirdo and we love him.
Thursday, April 16, 2009
Smorgasbord
River's new swing...
I guess it's comfortable.
Slightly more enthusiastic.
Side-lying position.
His new bathtub.
I guess it's comfortable.
Slightly more enthusiastic.
Side-lying position.
His new bathtub.
Binky Love
River had a couple days last week when he was obsessed with his pacifier. He was just not happy when it was not in his mouth. This is unusual for him lately. Perhaps it was his teething, or hunger after a spell of not feeling well. Whatever it was, we took this video to share it with all of you. Hope you enjoy it!
A little about me
I think I have mentioned previously that I am doing a lot of work get healthy. I have joined weight watchers, started regular spinning classes and have added in strength training when I have extra time. I do still allow myself an adult beverage most evenings, but have cut a lot of sugar and fat out of my diet. Today I dragged my tired rump out of bed at 5am for a 6am spinning class. My new heart monitor tells me that I burned 780 calories in that hour. It's the 2nd best hour of my day - the 1st being when I come home from work and am greeted by my sweeties. I think I am addicted to spinning. Not a bad addiction I suppose. :)
Wednesday, April 15, 2009
Good news
I have excellent news to share -- I'm pregnant! Nope, just kidding, but River's Leckey chair was approved by our insurance company. He should have his hot little buns in it by the end of the month. I am soooo excited!
We also had a great visit with the orthopedist yesterday. Not only was River an absolute peach during the visit, but x-rays showed he has wonderful hips. He must take after his mums. We have heard that some children with tone issues require hip surgery because the hip joint doesn't develop properly, but that is not the case with our little froggie. We're now cleared to practice more weightbearing with our super star.
It's interesting how a good medical appointment can lift my spirits. It's not as if she told us any wonderful news. She couldn't answer our many questions - will he stand? will he walk? will he get stronger? I don't even think I learned anything significant about him in the course of the visit (other than he has great hips of course). So why is it that I find the visit so reassuring? It's having another set of eyes on him. It's hearing the confidence in her voice as she makes her assessment. He smiled at her the entire time she talked and I walked out feeling comfortable with the unknowns of why we are here, where we are going, and how we'll get there.
We also had a great visit with the orthopedist yesterday. Not only was River an absolute peach during the visit, but x-rays showed he has wonderful hips. He must take after his mums. We have heard that some children with tone issues require hip surgery because the hip joint doesn't develop properly, but that is not the case with our little froggie. We're now cleared to practice more weightbearing with our super star.
It's interesting how a good medical appointment can lift my spirits. It's not as if she told us any wonderful news. She couldn't answer our many questions - will he stand? will he walk? will he get stronger? I don't even think I learned anything significant about him in the course of the visit (other than he has great hips of course). So why is it that I find the visit so reassuring? It's having another set of eyes on him. It's hearing the confidence in her voice as she makes her assessment. He smiled at her the entire time she talked and I walked out feeling comfortable with the unknowns of why we are here, where we are going, and how we'll get there.
Sunday, April 12, 2009
Another picture in the awaited chair
Mary sent me some of the pictures she took of River in his chair. They are fantastic and are making me even more impatient to get this chair. The request for the chair has been submitted to the insurance company and once it is approved (if it is approved) it will then go to the Leckey company and they will ship it out assuming there is no hold up with production. At the very soonest we'll have it in a month, but more likely it will be sometime in June.
Doesn't he look great?
Doesn't he look great?
Tuesday, April 7, 2009
Inspired to Blog
What I love most about blogging, what motivates me to continue, is all the feedback. I love hearing from people about how they check the blog, how they look forward to reading the blog. I worry that sometimes I share too much, other times I wonder what to write about. Today I'll share something personal.
It wasn't long ago that Julia and I would end our evening in bed crying together. It was our exhaustion, our grief, our sadness over what we were experiencing. Slowly the intensity of the grief lessened and the crying was contained until our therapy appointments. For some reason it returned last night. I was struck by a slight feeling of sadness and emptiness. And I realized River was difficult to connect with that evening. He seemed distant to me. I am afraid of that distance. Even though he smiles and laughs I am fearful that we won't be able to connect. Frequently our relationship feels one-sided. We give, we interact, we chatter, but we don't always get back. Never had I imagined that I wouldn't be able to connect with my son. It's a simple desire, connection. It means so much to us as humans, as mothers. So today I was sad, even depressed, but I allow myself to experience this and know that I will feel better soon. Tomorrow or the next day I will have a different perspective. I will again appreciate the gifts that he brings to our lives.
River, Katie and a new book from the President of the Southern branch of the RAWC Fan Club.
It wasn't long ago that Julia and I would end our evening in bed crying together. It was our exhaustion, our grief, our sadness over what we were experiencing. Slowly the intensity of the grief lessened and the crying was contained until our therapy appointments. For some reason it returned last night. I was struck by a slight feeling of sadness and emptiness. And I realized River was difficult to connect with that evening. He seemed distant to me. I am afraid of that distance. Even though he smiles and laughs I am fearful that we won't be able to connect. Frequently our relationship feels one-sided. We give, we interact, we chatter, but we don't always get back. Never had I imagined that I wouldn't be able to connect with my son. It's a simple desire, connection. It means so much to us as humans, as mothers. So today I was sad, even depressed, but I allow myself to experience this and know that I will feel better soon. Tomorrow or the next day I will have a different perspective. I will again appreciate the gifts that he brings to our lives.
River, Katie and a new book from the President of the Southern branch of the RAWC Fan Club.
Monday, April 6, 2009
Sick Monkey
I am glad I haven't been keeping track of how many times River has been sick this year, but it feels like a lot. It wouldn't be such a burden if it didn't take so much out of him, and us. Friday he started wretching and not tolerating his formula. By Saturday we switched to pedialyte and even that he wasn't tolerating. He was dry heaving on an empty belly. It was awful for all of us. Fortunately by Sunday morning he was able to tolerate some fluids, and now we're almost back to his full formula feeds. He even slept through the night! I am glad this episode resolved so quickly, as it usually it hangs on for awhile, affecting not only his mood but his ability to tolerate all of his therapies. I'll be glad when the cold season is finally over.
Sunday, March 29, 2009
Practicing Good Dental Habits
River has always enjoyed oral stimulation -- it started with the pacifier, then it became our fingers in his mouth, and now the toothbrush. It's an easy trick to calm him (we used it at our recent doctor's appointment). And now he seems to be learning how to hold the toothbrush, and bring it towards his mouth. We think it's amazing and so we're sharing a recent learning moment. Unfortunately this chair does not give him proper support and so you'll see him arching his back when he is trying to initiate movement. Hopefully this will be rectified when his new chair arrives. We hope you enjoy this video as much as we do!
Wednesday, March 25, 2009
Blogspot not Facebook
Last night was a terrible night. We stayed over in Worcester with Julia's family, in preparation for an appointment in Boston, and River was up from about 1am to 5:30. Our alarm went off at 6. I had no idea what was going on until I stuck my finger in his mouth this morning and felt a new molar poking through. One he had been working on for awhile. I think it's his 4th. None of them have completely come in, but there are points poking up in his whole mouth. But while I was laying awake I realized that I'd rather spend more time updating River's blog, rather than updating (and checking other's) status in Facebook. What is the point really? I admit it's a great tool for finding old friends, classmates, even connecting with new friends. But it does not feel like a quality experience. So here I am, in my attempt to carry through with my resolution.
Our appointment in Boston was with a very popular, difficult to get into pediatric opthalmologist at Boston Children's. I was secretly hoping that he'd get some cute glasses, but no such luck. It was similar to other appointments we've had... his eyes are fine, the problem lies in his brain. However, we did get some measurements which somewhat satisfy my left sided brain. They did a procedure called Visual Evoked Potential where they put 5 electrodes on his head and showed him a range of black and white stripes and measured the response in his brain. It was great since it is so difficult to evoke a response from him with traditional black and white images (they tried this also). They were able to tell us that his response time was slightly delayed and his acuity in his right eye was better than his left. The acuity in his right eye is roughly 20/400; his left is 20/600.
The opthalmologist recommended the spring conference by the Perkins School for the Blind which I already planned on attending, and continuing his involvement with early intervention and his visual therapist. The good news is that his cortical system is still developing and continues to improve.
Other good news is that we did get approved for our additional personal care hours which comes as a big relief. Last week we took River to Manchester, NH to try out different special chairs. We think we found one he likes. With the Leckey chair he is well supported and in a better position to learn and engage in his world. It's a hefty price but insurance should cover most or all of it. The bad news is that it will take several months to get it. Now that I've seen how good he looks in it, it will be difficult to be patient for it's arrival.
Finally, I posted about this in Facebook but I have to share it here also. I attended my first 6am spinning class this week. Not being a morning person, this is a pretty amazing feat. I had to wake up at 5am to make it to Keene in time for the class. I felt like a superstar afterwards!
Love to everyone,
Hannah
Here's River getting set up in the Leckey chair. It goes up and down so that he can sit at the kitchen table or get down low for play time. I'll post more pictures once he gets his own.
Our appointment in Boston was with a very popular, difficult to get into pediatric opthalmologist at Boston Children's. I was secretly hoping that he'd get some cute glasses, but no such luck. It was similar to other appointments we've had... his eyes are fine, the problem lies in his brain. However, we did get some measurements which somewhat satisfy my left sided brain. They did a procedure called Visual Evoked Potential where they put 5 electrodes on his head and showed him a range of black and white stripes and measured the response in his brain. It was great since it is so difficult to evoke a response from him with traditional black and white images (they tried this also). They were able to tell us that his response time was slightly delayed and his acuity in his right eye was better than his left. The acuity in his right eye is roughly 20/400; his left is 20/600.
The opthalmologist recommended the spring conference by the Perkins School for the Blind which I already planned on attending, and continuing his involvement with early intervention and his visual therapist. The good news is that his cortical system is still developing and continues to improve.
Other good news is that we did get approved for our additional personal care hours which comes as a big relief. Last week we took River to Manchester, NH to try out different special chairs. We think we found one he likes. With the Leckey chair he is well supported and in a better position to learn and engage in his world. It's a hefty price but insurance should cover most or all of it. The bad news is that it will take several months to get it. Now that I've seen how good he looks in it, it will be difficult to be patient for it's arrival.
Finally, I posted about this in Facebook but I have to share it here also. I attended my first 6am spinning class this week. Not being a morning person, this is a pretty amazing feat. I had to wake up at 5am to make it to Keene in time for the class. I felt like a superstar afterwards!
Love to everyone,
Hannah
Here's River getting set up in the Leckey chair. It goes up and down so that he can sit at the kitchen table or get down low for play time. I'll post more pictures once he gets his own.
Friday, March 20, 2009
Another laughing video
This is a game River and his friend Katie made up. The toy in the video is one of his sensory toys. It happens to have a hole in one end and as they discovered, squirts a tiny bit of air when squeezed. Enjoy.
Sunday, February 15, 2009
What's been brewing
I wish I could say this post was about beer, although we have been drinking quite a bit of it lately. But instead this post is to share a bit of the circus that has been in my head. It's time to vent.
PCA Hours. Every six months we have to reapply for River's Personal Care hours. I applied for an increase (from 30 to 40) and was denied. We did get the 30 hours, but not the increase. At first I was just grateful to not lose any hours given the current economic situation, however, I've since decided that we need those hours and so I am appealing the state's decision. River is still completely immobile, does not feed himself, cannot easily communicate his needs, and can be rather fussy (can you blame him?). His child care providers are instrumental in not only providing daily living care, but also his supportive therapies so that he can someday sit, crawl, walk, communicate, and we need the help so that we can sustain caring for him over the next months and years. So I've initiated the appeal process and it may be a long time before I get anywhere but I'm not giving up so easily.
Nursing Hours. In most states if you have a child with a feeding tube, you automatically are provided with a home health nurse for so many hours each week. How many hours does River get? Nada. So I'm appealing this one too.
Equipment. At one time I dreaded looking at equipment. It was terribly scary, and it still can be, but I see the importance of it. River doesn't get the proper support from his highchair, stroller, boppy pillow, etc. And he doesn't get to practice his reaching, or postural support when we hold him so he needs other options. Fortunately the state, and my private insurance will help pay for these items as each piece can cost thousands of dollars. Unfortunately this means dealing with the state's bureaucracy. I hope it goes smoother than the above mentioned items. And once I start thinking about equipment, I can't help but think about vehicles. A van seems imminent, but I am not quite there yet.
Finally, I am just so frustrated that there isn't someone to tell me how to do this. Often I feel alone in navigating these systems. I know there are others before me who have traveled similar paths. Why isn't there a guide? Could it be that it is a process that can only be learned by doing, not by telling? Would a book even be helpful? Someone told me that it will get easier as I get more familiar with these processes. I believe her, but it's difficult getting there.
Now for some pictures...
Practicing weightbearing on his legs. He has made a lot of progress here. And he can do it for a few seconds without our support.
He loves his light box and is able to spend quality time in hands and knees as well as sidesitting seen here.
PCA Hours. Every six months we have to reapply for River's Personal Care hours. I applied for an increase (from 30 to 40) and was denied. We did get the 30 hours, but not the increase. At first I was just grateful to not lose any hours given the current economic situation, however, I've since decided that we need those hours and so I am appealing the state's decision. River is still completely immobile, does not feed himself, cannot easily communicate his needs, and can be rather fussy (can you blame him?). His child care providers are instrumental in not only providing daily living care, but also his supportive therapies so that he can someday sit, crawl, walk, communicate, and we need the help so that we can sustain caring for him over the next months and years. So I've initiated the appeal process and it may be a long time before I get anywhere but I'm not giving up so easily.
Nursing Hours. In most states if you have a child with a feeding tube, you automatically are provided with a home health nurse for so many hours each week. How many hours does River get? Nada. So I'm appealing this one too.
Equipment. At one time I dreaded looking at equipment. It was terribly scary, and it still can be, but I see the importance of it. River doesn't get the proper support from his highchair, stroller, boppy pillow, etc. And he doesn't get to practice his reaching, or postural support when we hold him so he needs other options. Fortunately the state, and my private insurance will help pay for these items as each piece can cost thousands of dollars. Unfortunately this means dealing with the state's bureaucracy. I hope it goes smoother than the above mentioned items. And once I start thinking about equipment, I can't help but think about vehicles. A van seems imminent, but I am not quite there yet.
Finally, I am just so frustrated that there isn't someone to tell me how to do this. Often I feel alone in navigating these systems. I know there are others before me who have traveled similar paths. Why isn't there a guide? Could it be that it is a process that can only be learned by doing, not by telling? Would a book even be helpful? Someone told me that it will get easier as I get more familiar with these processes. I believe her, but it's difficult getting there.
Now for some pictures...
Practicing weightbearing on his legs. He has made a lot of progress here. And he can do it for a few seconds without our support.
He loves his light box and is able to spend quality time in hands and knees as well as sidesitting seen here.
Wednesday, February 11, 2009
Happy Boy Video
I am so happy to share this video with everyone. I have been trying to upload it for weeks and finally succeeded. This video demonstrates the moments I live for...
Wednesday, January 14, 2009
Friday, January 9, 2009
Tuesday, January 6, 2009
News for the New Year
With the holidays and general chaos of life, I've been delinquent about posting the happenings. I miss sharing our ups and downs. Here's a little recap.
1. River has 2 new teeth (four total)
2. River has gained 2 pounds in the last month. He now weighs 19 pounds.
3. In addition to Mary, he is seeing a new Physical Therapist and practicing supported sitting and standing. I'm hopeful that he may be able to sit independently in 2009.
4. He is on a new medication (a low dose erythromycin) which seems to be helping him digest his food easier, and therefore helping with weight gain.
5. He got his first haircut. Finally he can see (well, sort of).
And for the New Year, we have some plans and resolutions:
1. River's Mommies are working on getting healthy. Joining the gym, eating better, taking our vitamins. We have to get strong to carry around our little heavyweight.
2. We're planning our first overnight getaway. River's aunties will take care of him at home while we head to the big city (Northampton) for dinner, hotel, shopping, sleeping in.... ahhhhh.
3. I think two is enough, don't you? After all, we are still trying to go with the flow amidst a somewhat turbulent path...
Thanks for everyone's comments and support. I love knowing that River has a fan club out there. Happy New Year everyone! xoxo
1. River has 2 new teeth (four total)
2. River has gained 2 pounds in the last month. He now weighs 19 pounds.
3. In addition to Mary, he is seeing a new Physical Therapist and practicing supported sitting and standing. I'm hopeful that he may be able to sit independently in 2009.
4. He is on a new medication (a low dose erythromycin) which seems to be helping him digest his food easier, and therefore helping with weight gain.
5. He got his first haircut. Finally he can see (well, sort of).
And for the New Year, we have some plans and resolutions:
1. River's Mommies are working on getting healthy. Joining the gym, eating better, taking our vitamins. We have to get strong to carry around our little heavyweight.
2. We're planning our first overnight getaway. River's aunties will take care of him at home while we head to the big city (Northampton) for dinner, hotel, shopping, sleeping in.... ahhhhh.
3. I think two is enough, don't you? After all, we are still trying to go with the flow amidst a somewhat turbulent path...
Thanks for everyone's comments and support. I love knowing that River has a fan club out there. Happy New Year everyone! xoxo
Sunday, January 4, 2009
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