Showing posts with label Olivia. Show all posts
Showing posts with label Olivia. Show all posts
Monday, July 29, 2013
Yoga girl
Thanks to some new friends, Livi did yoga yesterday! She's done it before watching Amelia at home. I was just amazed at how well she was able to follow along with the instructor yesterday. We had an impromptu yoga session in a neighbor's back yard.
Monday, November 26, 2012
Sunday, November 25, 2012
Olivia's Morning Chores
Olivia is one of my best little helpers. She loves being useful around the house and doing chores. She also helps with laundry and cleaning up her toys.
"UH OH! OOOOPSIE!"
I was in another room and heard Olivia say very distinctly, "UH OH!!! OOOOPSIE!" I laughed to myself, thinking how clear and cute it sounded, so appropriate, as if she had done something wrong..... oh... wait, where is she?! So I went and had a look at what she was doing.
Dad was painting the downstairs bathroom for me and Olivia was diligently watching him all day. She managed to contain herself until almost the end of the night. She snagged one of Amelia's pencils and decided to climb on top of the ladder and do a little decorating herself.
Looks like we'll be repainting again.
Friday, November 23, 2012
Bundle of Energy
I took these videos the night Rafe left for deployment. We sat around the fire all day escaping from the cold and wet rain outside. Looking at Olivia running around made me think of how much I wished I had seen a video like this when she was born. I could not have imagined at that time how much she would be able to do. Not only was she born with Prader-Willi Syndrome, but the additional birth trauma left her so motionless for so long that it was a celebration if she just turned her own head. Now sometimes I can't catch her if she decides to run around the "loop" of the kitchen/dining room/livingroom/hall of the house!
Sunday, September 23, 2012
"Is it the Prada Willi?"
There is a question that circulates in my house every so often. It's said by all of us, in many different ways, and every time I cringe.
Sometimes when I explain to Amelia why she needs to eat her ice cream in the garage with Grandpa instead of in the house, she says "It's because of the Prada Willi, right Mama?"
Sometimes when Olivia is climbing my legs while I'm cooking because she's so hungry and no one else is at home to watch her... and Rafe walks in the door and sees her, asking with anguish "Do you think this is the start of it? Is this the Prader Willi kicking in?"
Sometimes when she is squealing at the top of her voice at the table because she wants something more or different to eat than Amelia, she'll ask "Is it the Prada Willi?"
Sometimes when she screams at transitions and I have to explain to others that she needs to be able to say "bye bye" and have time to process; and that yelling and spanking won't help, I say, "It's the Prader-Willi"
And then sometimes, like tonight, I watch her cry piteously and beat her stomach over and over. I ask myself, "Is this Prader-Willi?"
I hate it every time. I hate it most of all for sweet Olivia, who doesn't understand why someone she loves won't feed her.
Sometimes when I explain to Amelia why she needs to eat her ice cream in the garage with Grandpa instead of in the house, she says "It's because of the Prada Willi, right Mama?"
Sometimes when Olivia is climbing my legs while I'm cooking because she's so hungry and no one else is at home to watch her... and Rafe walks in the door and sees her, asking with anguish "Do you think this is the start of it? Is this the Prader Willi kicking in?"
Sometimes when she is squealing at the top of her voice at the table because she wants something more or different to eat than Amelia, she'll ask "Is it the Prada Willi?"
Sometimes when she screams at transitions and I have to explain to others that she needs to be able to say "bye bye" and have time to process; and that yelling and spanking won't help, I say, "It's the Prader-Willi"
And then sometimes, like tonight, I watch her cry piteously and beat her stomach over and over. I ask myself, "Is this Prader-Willi?"
I hate it every time. I hate it most of all for sweet Olivia, who doesn't understand why someone she loves won't feed her.
Friday, May 4, 2012
Not sure how I feel about this....
Earlier in the week, our speech therapist came by and we did some chewing "tests" with Olivia. I had a plate full of things that were or had been difficult for her to chew and navigate in her mouth. Dried apples, cinnamon coated almonds... things like that. She was able to chew them all, finally! Success!
But as the ST noted, she was noticably better at chewing on one side of her mouth than the other. This led us to a discussion about how she's always had a better side - even the OT and PT have commented on weakness on one side. We've had scoliosis checks and leg growth checks because she favors one side and her hip seems lower on one side; all to come out normal. It was finally determined to be some sort of muscular issue of unknown origin. But during this discussion, our ST asked us if we'd considered a neurology consult.
No, we'd never had. Not until that moment. We (I) had always put it down to the PIC lines put in her when she was born. She had to lay there with the lines on the same side, the weak side, for almost 3 months because they had such a hard time putting them in the other side. Once in, they didn't want to move them. I had always assumed that it contributed to a type of atrophy of some sort and she would always be just a little weaker.
But neurology? Never considered it. I had a quick visit with her pediatrician this morning, and he mentioned as well that he had noticed an asymmetry to her face that corresponded with the opposite side of her body that has the problem (which made sense after he explained it). As he began to talk about it, he mentioned mild cerebral palsy as something that might be considered.
Cerebral Palsy. Of all the things I've thought about, I haven't heard that word since her early days in the hospital. When no one could figure out what was wrong with her or why she was so motionless, CP kept popping up. Once it was determined she had Prader-Willi Syndrome, I never looked back at that possible diagnosis again.
Not even when we visited her endocrinologist last year - the one with over 400 Prader-Willi patients. The one who is the specialist in this field, who researches PWS kids and helps us find new breakthroughs. The one whose assistant said, in taking our history once again and hearing the list of traumatic things that happened during her first few months, "You know that's not ALL Prader-Willi Syndrome, right?" It wasn't even a blip on our radar, because the symptoms mimic each other to a certain extent at birth.
I wish I knew why I never pursued that weakness more thoroughly. I'm not sure we would have done anything differently with a CP diagnosis. But for some reason, that possibility is hitting me harder than if she were to get a PDD-NOS diagnosis, which is another possibility soon.
So now we have a neuro consult. And a gastro one as well, for other ongoing issues she is having.
But as the ST noted, she was noticably better at chewing on one side of her mouth than the other. This led us to a discussion about how she's always had a better side - even the OT and PT have commented on weakness on one side. We've had scoliosis checks and leg growth checks because she favors one side and her hip seems lower on one side; all to come out normal. It was finally determined to be some sort of muscular issue of unknown origin. But during this discussion, our ST asked us if we'd considered a neurology consult.
No, we'd never had. Not until that moment. We (I) had always put it down to the PIC lines put in her when she was born. She had to lay there with the lines on the same side, the weak side, for almost 3 months because they had such a hard time putting them in the other side. Once in, they didn't want to move them. I had always assumed that it contributed to a type of atrophy of some sort and she would always be just a little weaker.
But neurology? Never considered it. I had a quick visit with her pediatrician this morning, and he mentioned as well that he had noticed an asymmetry to her face that corresponded with the opposite side of her body that has the problem (which made sense after he explained it). As he began to talk about it, he mentioned mild cerebral palsy as something that might be considered.
Cerebral Palsy. Of all the things I've thought about, I haven't heard that word since her early days in the hospital. When no one could figure out what was wrong with her or why she was so motionless, CP kept popping up. Once it was determined she had Prader-Willi Syndrome, I never looked back at that possible diagnosis again.
Not even when we visited her endocrinologist last year - the one with over 400 Prader-Willi patients. The one who is the specialist in this field, who researches PWS kids and helps us find new breakthroughs. The one whose assistant said, in taking our history once again and hearing the list of traumatic things that happened during her first few months, "You know that's not ALL Prader-Willi Syndrome, right?" It wasn't even a blip on our radar, because the symptoms mimic each other to a certain extent at birth.
I wish I knew why I never pursued that weakness more thoroughly. I'm not sure we would have done anything differently with a CP diagnosis. But for some reason, that possibility is hitting me harder than if she were to get a PDD-NOS diagnosis, which is another possibility soon.
So now we have a neuro consult. And a gastro one as well, for other ongoing issues she is having.
Wednesday, April 25, 2012
Lions and Tigers and Therapy, Oh My! (Part 2)
About 3 weeks ago, we started some music/brain therapy with Olivia. I'd been asking for this for some time after reading about successes with it. My OT did tons of research on the hows and whys of all the different types of brain and music therapy out there before deciding on one from Advanced Brain Technologies. More information can be found here at The Listening Program. Two pages that explain a bit about how it works are here and here. Francis (*my OT) is extremely thorough and spoke with many therapists using different styles and companies to find out what worked and what didn't. I was also very comfortable with this one; especially once I found out how many research studies they are involved in and knowing that the military uses this program for PTSD and Wounded Warriors. On the ABT website you can find a link to info about all the studies, past and present.
(*side note - I have no kickbacks from anything I'm going to say in regard to therapies. I am posting the links for the PWS parents who will come here for this information so it will save time answering questions later on)
I have a set of headphones and CD's and the OT also has a set of headphones, but her music is on an Ipod. Her headphones are also bone conduction, where mine are ones recommended by the company but without the bone conduction aspect (it was too expensive). While the therapy itself is part of the OT session, the equipment we use at home was an out of pocket expense for us.
Frances does OT with her twice a week and uses the headphones during the session; and I use them with her every day, twice a day.
The first day we just tried to get Livi used to the headphones. She really fought them at first, but we tried repeatedly until she became more comfortable with them on. Once the music was on, she was entranced. When Frances took the earphones off of her, she gave me one of her very rare, super sad faces where her mouth turns down into a perfect upside down U - an expression that I think is uniquely Prader Willi.
That evening, I happened to notice her run through the kitchen. It took me a few seconds to realize that for a few brief seconds, she looked like a normal two year old. She ran without the lopsided loping gait that she has momentarily before lapsing back into her normal run. I really thought that it was just a coincidence at the time.
The next morning I saw her try to put the earphones on her own ears. I just stood watching her for a moment try to figure out how to do it and then helped her. She was so close to being able to coordinate it that it really surprised me. I played the music for her to listen to while I was getting the girls ready for school and making breakfast. When it came time to take them off, she got extremely upset. She began crying without moving or making a sound; only standing there with that upside down U and super sad face all screwed up in misery, shoulders slumped. She ran off after that and as I put them away, I noticed she was hiding behind a huge quilt we have hanging in the hallway. I thought she was playing at first, but when I went to pull back the quilt I saw her crying silently to herself. It was such strange behavior for her - she's always so sunny and cheerful, especially in the mornings.
Lesson to self: Turn the music down slowly, let the earphones sit for a minute and then remove while distracting. The sudden change was too abrupt for her.
It's kind of hard to describe, but as this continued over the last three weeks, I kept seeing more and more sparks and flashes of behavior that I just couldn't put down to coincidence anymore. She is absolutely enamored with the music. She is responding more quickly to commands; I've seen her run way more than I ever have and with more coordination; she's more involved in conversation (even though we can't understand her) and somehow she just seems to have more cognition in general. This doesn't mean she's acting like a normal 2 year old by any means, but for her the improvements are a big deal. They are subtle changes in some ways... the best I can describe it is that it seems like her processing power just sped up a few degrees.
So yesterday we added another wrinkle to this - I gave her a liquid supplement called Pearl's Daily B for the first time. I personally favor this supplement as the man who sells it has it manufactured for his beautiful daughter and her unique needs.
OH. MY. GOODNESS.
She was on fire all day. At the PT session (2 pm) she was racing around with so much energy that it was commented on. She was zooming up and down stairs, chatting and singing away, riding bikes and just generally being rambunctious. At school they commented on how engaged she was all day. And at home she was like the energizer bunny. She even ran through the house several times - running flat out, using all four limbs in proper position. I don't know if it was the B, or the therapy or both.. but it was just such an obvious change that people outside our family commented on it.
We had a weekly bible study at our house last night. One of the men who has only been here about 3 times commented on how alive Olivia seemed and how he had never heard her talk so much before. She was just babbling away, running up to him and hugging him and running around having fun.
At the end of the study, we were all saying our goodbyes when out of the blue we heard a very clear "BYE". So clear and loud, in fact, that one of the women who came to the study thought it was her son saying it. We all looked kind of astonished and looked at Livi who realized that this was a cool thing, so she kept saying it over and over again. Typically when she speaks, her words are very slurred and she sort of whispers them or mouths them without sound. She has said "bye" before, but it has always sounded something like a tired old Southern lady saying "bahh" with her voice dropping off at the end. She has almost always dropped the last sounds of any word she's attempted and most of the time she literally sounds like she has marbles in her mouth while at the same time speaking gobbledygook. This time it was a loud and clear "BYE" with an emphasis on the YE.
I don't know if it's the ABT therapy, the B vitamins, or both. I've tried hard to keep a level head about the things I've seen. At first I thought they were coincidences since I felt that surely it couldn't work that quickly, even though what I was seeing was subtle. But all these coincidences are adding up for me. I feel like we are seeing real results - It was so notable that in the follow up email with prayer requests sent after the meeting, our fearless facilitator wrote this: "Praise that Olivia has been responding positively to some new treatment approaches. She has shown an improvement in her development. Monday night she very clearly said bye to Janis and this has never happened before where she spoke so clearly. What a joy to see a miracle happen right before our very eyes! "
(*side note - I have no kickbacks from anything I'm going to say in regard to therapies. I am posting the links for the PWS parents who will come here for this information so it will save time answering questions later on)
I have a set of headphones and CD's and the OT also has a set of headphones, but her music is on an Ipod. Her headphones are also bone conduction, where mine are ones recommended by the company but without the bone conduction aspect (it was too expensive). While the therapy itself is part of the OT session, the equipment we use at home was an out of pocket expense for us.
Frances does OT with her twice a week and uses the headphones during the session; and I use them with her every day, twice a day.
The first day we just tried to get Livi used to the headphones. She really fought them at first, but we tried repeatedly until she became more comfortable with them on. Once the music was on, she was entranced. When Frances took the earphones off of her, she gave me one of her very rare, super sad faces where her mouth turns down into a perfect upside down U - an expression that I think is uniquely Prader Willi.
That evening, I happened to notice her run through the kitchen. It took me a few seconds to realize that for a few brief seconds, she looked like a normal two year old. She ran without the lopsided loping gait that she has momentarily before lapsing back into her normal run. I really thought that it was just a coincidence at the time.
The next morning I saw her try to put the earphones on her own ears. I just stood watching her for a moment try to figure out how to do it and then helped her. She was so close to being able to coordinate it that it really surprised me. I played the music for her to listen to while I was getting the girls ready for school and making breakfast. When it came time to take them off, she got extremely upset. She began crying without moving or making a sound; only standing there with that upside down U and super sad face all screwed up in misery, shoulders slumped. She ran off after that and as I put them away, I noticed she was hiding behind a huge quilt we have hanging in the hallway. I thought she was playing at first, but when I went to pull back the quilt I saw her crying silently to herself. It was such strange behavior for her - she's always so sunny and cheerful, especially in the mornings.
Lesson to self: Turn the music down slowly, let the earphones sit for a minute and then remove while distracting. The sudden change was too abrupt for her.
It's kind of hard to describe, but as this continued over the last three weeks, I kept seeing more and more sparks and flashes of behavior that I just couldn't put down to coincidence anymore. She is absolutely enamored with the music. She is responding more quickly to commands; I've seen her run way more than I ever have and with more coordination; she's more involved in conversation (even though we can't understand her) and somehow she just seems to have more cognition in general. This doesn't mean she's acting like a normal 2 year old by any means, but for her the improvements are a big deal. They are subtle changes in some ways... the best I can describe it is that it seems like her processing power just sped up a few degrees.
So yesterday we added another wrinkle to this - I gave her a liquid supplement called Pearl's Daily B for the first time. I personally favor this supplement as the man who sells it has it manufactured for his beautiful daughter and her unique needs.
OH. MY. GOODNESS.
She was on fire all day. At the PT session (2 pm) she was racing around with so much energy that it was commented on. She was zooming up and down stairs, chatting and singing away, riding bikes and just generally being rambunctious. At school they commented on how engaged she was all day. And at home she was like the energizer bunny. She even ran through the house several times - running flat out, using all four limbs in proper position. I don't know if it was the B, or the therapy or both.. but it was just such an obvious change that people outside our family commented on it.
We had a weekly bible study at our house last night. One of the men who has only been here about 3 times commented on how alive Olivia seemed and how he had never heard her talk so much before. She was just babbling away, running up to him and hugging him and running around having fun.
At the end of the study, we were all saying our goodbyes when out of the blue we heard a very clear "BYE". So clear and loud, in fact, that one of the women who came to the study thought it was her son saying it. We all looked kind of astonished and looked at Livi who realized that this was a cool thing, so she kept saying it over and over again. Typically when she speaks, her words are very slurred and she sort of whispers them or mouths them without sound. She has said "bye" before, but it has always sounded something like a tired old Southern lady saying "bahh" with her voice dropping off at the end. She has almost always dropped the last sounds of any word she's attempted and most of the time she literally sounds like she has marbles in her mouth while at the same time speaking gobbledygook. This time it was a loud and clear "BYE" with an emphasis on the YE.
I don't know if it's the ABT therapy, the B vitamins, or both. I've tried hard to keep a level head about the things I've seen. At first I thought they were coincidences since I felt that surely it couldn't work that quickly, even though what I was seeing was subtle. But all these coincidences are adding up for me. I feel like we are seeing real results - It was so notable that in the follow up email with prayer requests sent after the meeting, our fearless facilitator wrote this: "Praise that Olivia has been responding positively to some new treatment approaches. She has shown an improvement in her development. Monday night she very clearly said bye to Janis and this has never happened before where she spoke so clearly. What a joy to see a miracle happen right before our very eyes! "
Tuesday, April 24, 2012
Lions and Tigers and Therapy, Oh My! (Part 1)
Because of our upcoming move, the past few weeks have been a whirlwind of thinking a lot about therapy. Thinking about therapies available in Jacksonville; checking out therapist references and resources; visiting schools and clinics to see which setting will work best for Olivia, getting on waiting lists (3-6 months for pediatric therapy.. wow) and researching what alternative therapies are in the area we are moving to.
In addition, because Olivia will turn 3 and age out of the EDIS system (military early intervention) immediately after our move, I'm cramming on information about IEP's, Wright's Law, FAPE, IDEA, Section 504...who knew that special needs education was as acronym ridden as the military? I'm learning an entirely new language in a crash course.
Last, but not least, some therapies I've wanted for Olivia for a long time (swimming, hippotherapy, yoga, brain/music, ABA) are closer to becoming available to me as she is getting older and we are negotiating those possibilities as well. In the past three weeks we've added ABT therapy, added another supplement, received approval to start 6 hours a week of ABA therapy through Butterfly Effects and found a pediatric Occupational Therapist who is also a special needs yoga instructor who will come to our house and do yoga primarily with Livi, but also the whole family.
Whew. Are you tired yet? I am.
In addition, because Olivia will turn 3 and age out of the EDIS system (military early intervention) immediately after our move, I'm cramming on information about IEP's, Wright's Law, FAPE, IDEA, Section 504...who knew that special needs education was as acronym ridden as the military? I'm learning an entirely new language in a crash course.
Last, but not least, some therapies I've wanted for Olivia for a long time (swimming, hippotherapy, yoga, brain/music, ABA) are closer to becoming available to me as she is getting older and we are negotiating those possibilities as well. In the past three weeks we've added ABT therapy, added another supplement, received approval to start 6 hours a week of ABA therapy through Butterfly Effects and found a pediatric Occupational Therapist who is also a special needs yoga instructor who will come to our house and do yoga primarily with Livi, but also the whole family.
Whew. Are you tired yet? I am.
Friday, April 20, 2012
Meltdown
Last night I wanted to go to a meeting held here in town about South Carolina Connections Academy - an online school similar to K-12. I'm interested in learning about all of my options for schooling Olivia and Amelia in the future. Rafe was going to watch the girls for me, but unfortunately he wasn't home in time for me to go without them. What irony - the one night I go out without them turned out to be the one night he had to stay late for an all hands brief from General Amos. Can't really walk out of that one early.
Olivia was already acting very out of character during dinner. She threw her plate on the floor twice. The first time I turned her high chair around to face the wall while I cleaned it up, trying to figure out how to say, "Don't throw your food" in a positive way. It's only today that I figured out I should have said, "We keep our plates on the table when we are finished" or something similar. Still not sure. The second time she made a huge mess and I took her out of her high chair and told her dinner was finished. I've never seen her so upset. She cried and cried while I was cleaning it up.
At the meeting, she was squirming and screaming in my arms. While normally I can put her down and she will play quietly near me, this time she was running down the aisle toward the presenter so fast that I had to run down after her - all the way to the end. This happened 3 times during the night, because she would literally go limp and then frantically squirm out of my arms and she slipped away from me. I was in the back of the room and finally moved to the hallway and peeked my head around the corner of the room to try and hear what she was saying after the first 10 minutes of this. The information being presented was excellent, but I was missing so much of it that after 20 minutes, I just left with both the girls. I did learn that if you do online school, they subcontract with special needs care providers for OT, PT. And they do Speech Therapy over the internet, although I wasn't there long enough to find out how that worked.
It was such a frustrating evening even though it only lasted 30 minutes, and I couldn't help but think of the times to come. No one there knew Olivia couldn't really understand like a normal 2.5 year old the concept of behaving. I felt like a really awful mom because I kept getting dirty looks from the other parents there. She understands (I think) some actions and consequences, but concepts are something I'm having a hard time figuring out how to teach her. It all came so naturally to and with Amelia. Earlier in the day I had gone to a presentation by Butterfly Effects on ABA therapy. I think it's time for us to get involved with that so we have tools to respond appropriately to her behavior and don't accidentally reinforce it. Yesterday I also switched her Speech to the clinical setting starting May 7. All in all a busy day.
Surprisingly enough, Amelia told me this was "the best day ever!" When I asked her why, she said it was because she was spending time with me.
Olivia was already acting very out of character during dinner. She threw her plate on the floor twice. The first time I turned her high chair around to face the wall while I cleaned it up, trying to figure out how to say, "Don't throw your food" in a positive way. It's only today that I figured out I should have said, "We keep our plates on the table when we are finished" or something similar. Still not sure. The second time she made a huge mess and I took her out of her high chair and told her dinner was finished. I've never seen her so upset. She cried and cried while I was cleaning it up.
At the meeting, she was squirming and screaming in my arms. While normally I can put her down and she will play quietly near me, this time she was running down the aisle toward the presenter so fast that I had to run down after her - all the way to the end. This happened 3 times during the night, because she would literally go limp and then frantically squirm out of my arms and she slipped away from me. I was in the back of the room and finally moved to the hallway and peeked my head around the corner of the room to try and hear what she was saying after the first 10 minutes of this. The information being presented was excellent, but I was missing so much of it that after 20 minutes, I just left with both the girls. I did learn that if you do online school, they subcontract with special needs care providers for OT, PT. And they do Speech Therapy over the internet, although I wasn't there long enough to find out how that worked.
It was such a frustrating evening even though it only lasted 30 minutes, and I couldn't help but think of the times to come. No one there knew Olivia couldn't really understand like a normal 2.5 year old the concept of behaving. I felt like a really awful mom because I kept getting dirty looks from the other parents there. She understands (I think) some actions and consequences, but concepts are something I'm having a hard time figuring out how to teach her. It all came so naturally to and with Amelia. Earlier in the day I had gone to a presentation by Butterfly Effects on ABA therapy. I think it's time for us to get involved with that so we have tools to respond appropriately to her behavior and don't accidentally reinforce it. Yesterday I also switched her Speech to the clinical setting starting May 7. All in all a busy day.
Surprisingly enough, Amelia told me this was "the best day ever!" When I asked her why, she said it was because she was spending time with me.
Saturday, February 4, 2012
Just another day in the neighborhood...
One of the many reasons I love living on Parris Island and will miss it so much when we leave...
hanging out at home and hearing the sound of the Parris Island Marine Corps Band coming down your street on a beautiful January day in South Carolina. It gets really good at the 1:00 minute mark.
Livi was pretty impressed as well. She loves music, and especially things with a strong beat and rhythm.
And the grand finale!
Start 'em early...
 |
| I like to pretend to myself that teaching my children to do housework early will lead them to think it's natural and they do it with joy. Olivia is so excited to vacuum! She loves it. |
 |
| But you can see how well that worked by looking at the girl on the left :) She's full of joy....watching her little sister vacuum. |
Friday, February 3, 2012
Pics of the ear
This picture is just so I can show off her curls! :)
She almost looks like Amelia from this angle, only with brown hair instead of blonde.
Thursday, February 2, 2012
Argh.
I'm so glad this week is almost over. All I've been doing at home is survival mode - fix breakfast, lunch and dinner for everyone and put them to bed. Lots of phone calls and I've felt like I've been in paperwork hell with all the forms I've had to (and still have to) fill out for Olivia and family.
Things were busy and going well, but I came up against a bit of a roadblock today. We need to see a Pediatric Dietitian, preferably one who specializes in obesity. The closest one to us that fits that bill and who has some knowledge of Prader Willi Syndrome lives in Atlanta. (Bailey Koch with Atlanta Pediatric Nutrition if anyone is interested) Unfortunately Tricare won't cover any dietetic services unless they are given at a MTF (Military Treatment Facility). I talked with our Tricare representative and found out that it would literally take an act of Congress in order to get those services paid for. Joe Wilson, expect to be hearing from me soon!
In the meantime, we tried to find a way around that by going to the dietitian at the Naval Hospital and asking her to refer us to Bailey, hoping that once it was acknowledged that she couldn't help us it would get paid for. She agreed literally within the first 3 minutes that it would be best for us to go there and spent the better part of an hour trying to figure out a way for it to happen. It still came down to this...NO. The only option we had was finding a MTF anywhere in the US with the expertise to deal with that and then go there to get services. Travel not included. She is currently looking into it, but I doubt she will find anyone.
After coming to that conclusion, she gave me materials she gathered from the web about low calorie low carb diets and told me that literally the only thing she could find was that calories needed to be restricted between 33% and 70%. She said it was such a huge range, divided the difference and said we should restrict her calories 50%. I know she meant well, but it was probably one of the things that bothered me the most about the visit. She was giving me her best GUESS. On a major issue. I could have done that myself. It's not her fault at all, but I was bothered by that being my only option - again not her fault. Cut Livi's calories to 50% across the board and see if she gains weight. If she does, cut them again. Really? How do I make sure that she is getting all the nutrients for her growing brain? I asked if there was any way to have a test run to find out what nutrients her body was actually absorbing and she didn't know of anything. I know there is something out there; I just read about it but can't remember where.
We could pay for it out of pocket, but over the years it will add up to quite a bit of money and I really feel that since it's such a big part of the medical puzzle, it should be paid for. So I'm going to try several different avenues, including contacting a company I used when I was a Chef, to try and find solutions for this problem. One thing I know for sure - the military has a waiver for just about anything if you can figure out how to do it. So I'm hoping that I can find a way to get a waiver from Tricare somehow.
Next Monday is our visit to Dr. Miller in Florida. I don't feel prepared for this visit. I have so many questions in my head but can't seem to access them anymore after this week of discussing so many details related to Olivia.
I am very glad to be going to see someone this week who is the expert on PWS and who will be answering my questions and not the other way around as it has been all week. No matter which doctor or service I talk to, I'm the one educating them. Not complaining (too much), I understand why, but I'm weary. Very weary.
Things were busy and going well, but I came up against a bit of a roadblock today. We need to see a Pediatric Dietitian, preferably one who specializes in obesity. The closest one to us that fits that bill and who has some knowledge of Prader Willi Syndrome lives in Atlanta. (Bailey Koch with Atlanta Pediatric Nutrition if anyone is interested) Unfortunately Tricare won't cover any dietetic services unless they are given at a MTF (Military Treatment Facility). I talked with our Tricare representative and found out that it would literally take an act of Congress in order to get those services paid for. Joe Wilson, expect to be hearing from me soon!
In the meantime, we tried to find a way around that by going to the dietitian at the Naval Hospital and asking her to refer us to Bailey, hoping that once it was acknowledged that she couldn't help us it would get paid for. She agreed literally within the first 3 minutes that it would be best for us to go there and spent the better part of an hour trying to figure out a way for it to happen. It still came down to this...NO. The only option we had was finding a MTF anywhere in the US with the expertise to deal with that and then go there to get services. Travel not included. She is currently looking into it, but I doubt she will find anyone.
After coming to that conclusion, she gave me materials she gathered from the web about low calorie low carb diets and told me that literally the only thing she could find was that calories needed to be restricted between 33% and 70%. She said it was such a huge range, divided the difference and said we should restrict her calories 50%. I know she meant well, but it was probably one of the things that bothered me the most about the visit. She was giving me her best GUESS. On a major issue. I could have done that myself. It's not her fault at all, but I was bothered by that being my only option - again not her fault. Cut Livi's calories to 50% across the board and see if she gains weight. If she does, cut them again. Really? How do I make sure that she is getting all the nutrients for her growing brain? I asked if there was any way to have a test run to find out what nutrients her body was actually absorbing and she didn't know of anything. I know there is something out there; I just read about it but can't remember where.
We could pay for it out of pocket, but over the years it will add up to quite a bit of money and I really feel that since it's such a big part of the medical puzzle, it should be paid for. So I'm going to try several different avenues, including contacting a company I used when I was a Chef, to try and find solutions for this problem. One thing I know for sure - the military has a waiver for just about anything if you can figure out how to do it. So I'm hoping that I can find a way to get a waiver from Tricare somehow.
Next Monday is our visit to Dr. Miller in Florida. I don't feel prepared for this visit. I have so many questions in my head but can't seem to access them anymore after this week of discussing so many details related to Olivia.
I am very glad to be going to see someone this week who is the expert on PWS and who will be answering my questions and not the other way around as it has been all week. No matter which doctor or service I talk to, I'm the one educating them. Not complaining (too much), I understand why, but I'm weary. Very weary.
Tuesday, January 31, 2012
Saturday, January 21, 2012
First Stitches
Olivia took a head dive into a coffee table tonight, gashing open her earlobe and the neck behind it. She eventually ended up needing 9 stitches all together - 5 on the ear and 4 on the neck.
Needless to say we missed the meeting and went directly to the Naval Hospital (with all of one doctor in the ER). She was cheerful and chatty until we had to put her in a papoose wrap. 2 nurses and myself held her down while the doctor injected her with a local anesthetic before stitching her up. While they were doing this, she began crying again. She kept saying "ahl gah, ahl gah" (All gone, all done) over and over again, letting me know she wanted out of this. Finally she began crying, MAMMA! MAMMA!
The irony of all this is that it happened at an EFMP meeting - "Exceptional Family Member Program". It's basically the military's special needs division and a wonderful resource.
No, strike that, Mandy, it's AMAZING. And AWESOME. ;) But I digress.
The flyer said children were welcomed. They were and so both Rafe and I were there. However, the meeting area wasn't really childproofed and when you combine that with a bunch of developmentally delayed kids running around, something was bound to happen. I was actually surprised it was Olivia - I'm so used to her climbing, running, falling, crashing - all without getting hurt that I never thought it would really happen to her. She's been remarkably good about falling with a kind of graceful descent.
It happened so fast that it was surreal - I heard this really loud thump like a book hitting the floor hard and then silence. I didn't even realize it was a child at first, and it took me a second longer to realize it was Olivia. Others closer to her grabbed her and she still wasn't making a sound and I couldn't see her face. Rafe took her and started to hand her to me and by that time I could see her face screwed up in misery. She finally burst out in a scream and cried for maybe a minute. That's a pure PWS thing to cry for such a tiny amount of time...but it bothered me that she continued to whimper a bit after which is so unusual for her. She feels pain, but not to the degree that most of us do. I kept checking her face, even thought she had hit the right side of her face/ear and put ice on it. I have no idea why I didn't check her entire face, but when one of the moms who had seen her fall re-enacted the fall I realized that I checked the wrong side.
I lifted the hair off the other side of her face, expecting to see a red mark and that was about it. Instead, I saw a torn ear, blood all over her hair and neck on the underside of her hair. It's so thick and curly that had I not lifted it up, I would not have seen it at all.
Needless to say we missed the meeting and went directly to the Naval Hospital (with all of one doctor in the ER). She was cheerful and chatty until we had to put her in a papoose wrap. 2 nurses and myself held her down while the doctor injected her with a local anesthetic before stitching her up. While they were doing this, she began crying again. She kept saying "ahl gah, ahl gah" (All gone, all done) over and over again, letting me know she wanted out of this. Finally she began crying, MAMMA! MAMMA!
It was beautiful and painful at the same time. She's only recently (as in 2 weeks ago) said MAMA! again for the first time since over 26 months ago. Hearing her cry out for me was bittersweet, knowing that she needed me and wanted me, but yet not being able to give in and take her away from the thing that was upsetting her so much. All in all an exhausting night. My poor girl.
Wednesday, March 23, 2011
Scenes from a life
Princess Biker Fairy
Earning money for her bike by cleaning the stroller
My girls tinkling the ivories
MUSC campus in Charleston - going for a dental appointment with Olivia.
The city is blooming and beautiful.
Sauteeing oxtails for a braise
Some of the ingredients going into the braise... the gelatinous stock is actually leftover pan juices from a roast, chilled overnight and defatted. Easy stock.
Amelia's rendition of a "happy toaster with legs" - drawn for a dear family friend
Saying goodbye to good friends
Looking for a way up into the high chair
Playing dress up with friends
Temperature Dysregulation
One of Olivia's many issues is Temperature Dysregulation. She might grow out of it, but probably not.
Her base temperature used to be around 96, but I've stopped checking it the last six months and no longer know what it is. She seemed to be doing a better job regulating her temperature.
But this past week has been doing a number on her.. she doesn't do well when her routine of sleeping and eating are disturbed; and we've been outside a lot in the growing heat. We sleep with the house at 66 degrees at night and keep it around 70-72 in the day. It is far easier to keep her warm than it is to keep her cool. At night, she doesn't really move once she goes to sleep, so that heat accumulates under her body and around her and she gets really hot. After waking up from her nap yesterday, we took temperatures because she seemed so hot on her tummy and back and they were all over the board.
So now it's time to start packing ice packs/wet cloths/coolers everywhere we go as the weather gets warmer. We're going to the zoo next week and it's going to be tricky to keep her cool.
Patients often have some dysregulation of temperature, in which the baseline body temperature often measures in the 96s and 97s and sometimes lower; temperatures can drop even lower during the night. Less often, temperature values at baseline run higher than normal. This is a particularly important piece of information when assessing a mitochondrial patient who is sick with infectious symptoms. An apparent "low-grade" temperature of 100°F may be dismissed by an unknowing pediatric practice as being insignificant. However, if the patient's baseline temperature runs at 96°, such an impression may represent a mistaken conclusion. Autonomic dysregulation article hereWhat this means in practical terms is that yesterday her temperature ranged from 77 degrees (her feet) to 101 degrees (under her arms)...all at the same time.
Her base temperature used to be around 96, but I've stopped checking it the last six months and no longer know what it is. She seemed to be doing a better job regulating her temperature.
But this past week has been doing a number on her.. she doesn't do well when her routine of sleeping and eating are disturbed; and we've been outside a lot in the growing heat. We sleep with the house at 66 degrees at night and keep it around 70-72 in the day. It is far easier to keep her warm than it is to keep her cool. At night, she doesn't really move once she goes to sleep, so that heat accumulates under her body and around her and she gets really hot. After waking up from her nap yesterday, we took temperatures because she seemed so hot on her tummy and back and they were all over the board.
So now it's time to start packing ice packs/wet cloths/coolers everywhere we go as the weather gets warmer. We're going to the zoo next week and it's going to be tricky to keep her cool.
Monday, March 21, 2011
Olivia's Blue Eyes
There are no seven wonders of the world in the eyes of a child.
There are seven million.
~Walt Streightiff
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