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.
Showing posts with label pws. Show all posts
Showing posts with label pws. Show all posts
Friday, May 4, 2012
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! "
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.
Wednesday, March 23, 2011
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.
Saturday, March 19, 2011
CDC Success!
This morning was a bit hectic loading all of Olivia's stuff into the van (including the high chair); but well worth it in the long run. The nurse was there when I showed up and took Olivia directly from me while I was bringing in everything. I noticed she took her and played with her a bit, showed her a fish tank, and sat with her in the room to play with Olivia on her lap. As nice as it was, I am assuming she did it to get a feel for what Olivia's capabilities are. I later found out she stayed a couple of hours at the center and was there when Olivia's meds were drawn so there would be oversight.
Susan (our cognitive therapist from EDIS) was there after lunch and checked in on Olivia and the classroom to make sure things were running smoothly. She later called me with an update and report on how things went.
I went to go pick her up and the staff all told me how much they loved having her and what a great baby she was and to bring her back anytime... I think they were vastly relieved to find out how normal she is. The caregivers in the room told me they hadn't expected her to be so mobile and to be able to sit up. Not sure why they felt that way; I told them she could sit up but could not sit alone on a chair- she would fall over. It's not that she doesn't have the muscle strength to sit on the chair - it's that she doesn't understand how to sit on a chair. She can't keep her balance because she's not sure where her body is at in space on a chair yet.
The greatest thing about the CDC today was the caregivers telling me she was repeating sounds they made and babbling a lot; and she waved "bye bye" on her own to a woman she didn't know who was leaving the room. SHOCKING. I am so impressed! I talked it over with Susan and mentioned that I thought it would be a good idea to bring her there once a week for socialization and she agreed with me. The only negative was that she didn't sleep at all. They could not get her to lie down.
Oddly enough, when I brought her home and put her down for a nap, she only took about 1.5 hour nap. She woke up ok, but really reacted poorly to situations in the house. She actually got a frown on her face and cried, a real fussy cry, for about 15-20 seconds several times when she was with mom for no apparent reason. It honestly startled the heck out of both of us, and we started checking her whole body over to figure out what was wrong. She turned out to have an enlarged node on the back of her neck/head area. We called the doctor and were told it was a "shoddy lymph node" and to just watch it. I'm not even sure what that is at this point.
All in all, a busy day. I took Amelia to a going away luncheon with bouncy house for the woman who coordinates playdates in the neighborhood; then drove her over to Creative Stitches to finish sewing her shorts with Grandma. After they came home we went to an Oyster Roast put on by the battalion at Elliot's Beach, complete with another bouncy house and bonfire.
Susan (our cognitive therapist from EDIS) was there after lunch and checked in on Olivia and the classroom to make sure things were running smoothly. She later called me with an update and report on how things went.
I went to go pick her up and the staff all told me how much they loved having her and what a great baby she was and to bring her back anytime... I think they were vastly relieved to find out how normal she is. The caregivers in the room told me they hadn't expected her to be so mobile and to be able to sit up. Not sure why they felt that way; I told them she could sit up but could not sit alone on a chair- she would fall over. It's not that she doesn't have the muscle strength to sit on the chair - it's that she doesn't understand how to sit on a chair. She can't keep her balance because she's not sure where her body is at in space on a chair yet.
The greatest thing about the CDC today was the caregivers telling me she was repeating sounds they made and babbling a lot; and she waved "bye bye" on her own to a woman she didn't know who was leaving the room. SHOCKING. I am so impressed! I talked it over with Susan and mentioned that I thought it would be a good idea to bring her there once a week for socialization and she agreed with me. The only negative was that she didn't sleep at all. They could not get her to lie down.
Oddly enough, when I brought her home and put her down for a nap, she only took about 1.5 hour nap. She woke up ok, but really reacted poorly to situations in the house. She actually got a frown on her face and cried, a real fussy cry, for about 15-20 seconds several times when she was with mom for no apparent reason. It honestly startled the heck out of both of us, and we started checking her whole body over to figure out what was wrong. She turned out to have an enlarged node on the back of her neck/head area. We called the doctor and were told it was a "shoddy lymph node" and to just watch it. I'm not even sure what that is at this point.
All in all, a busy day. I took Amelia to a going away luncheon with bouncy house for the woman who coordinates playdates in the neighborhood; then drove her over to Creative Stitches to finish sewing her shorts with Grandma. After they came home we went to an Oyster Roast put on by the battalion at Elliot's Beach, complete with another bouncy house and bonfire.
Friday, March 18, 2011
Mixed Reactions
Lately when I see videos like this, I have very mixed reactions. The kids are cute and hilarious; but I always find myself a bit stunned at how animated and interactive they are. Their faces are so expressive, their reaction time is so quick, and their noises are loud and specific. It makes me sad for Olivia.
Wednesday, March 16, 2011
SNERT
We had our first SNERT yesterday for Olivia.
Currently with my husband deployed, my mom is my respite care provider. She's received permission from his CO and housing to live on base with me and it has been invaluable for Olivia's care and therapy. I think she is MUCH farther ahead than she would be otherwise because of the level of care and therapy she is receiving from both of us on a daily basis.
I want to take her out to thank her, and give us both a day of fun filled relaxation with no kids. But.. SHE is my respite care provider. So I looked into putting Olivia in the CDC (Child Development Center) on base for drop in care and found that I needed to do a SNERT to enroll her.
It was a little surreal - kind of like an IEP meeting for preschoolers. The director of the CDC was there; a representative from the EFMP office (Exceptional Family Member Program); and a nurse. I was told that a representative from EDIS (Educational Developmental Intervention Services) would also be there, but I think she was unavailable on such short notice.
The director interviewed me and asked me about Olivia's medical history and potential issues. It was hard to explain what was wrong with Olivia, because while I was stating the facts, she actually does better day to day right now than it sounded. It was sort of the feeling you get as a special needs parent when you think your child is doing great and your life has settled into "normal" right up until you go to the doctor's office and they make you fill out the questionnaire on developmental milestones - and you realize how far behind she really is. The director sounded really anxious and nervous, and every time I told her something it seemed she worried more and more. The CDC's have only recently begun accepting federal money for their food programs and so they have to abide by the disability inclusion laws for education. Prior to that, they did not.
The nurse kept trying to talk me into having Olivia taken care of at a local family provider home on base - basically a home child care business run by a mom. There are quite a few providers on both bases available for this option.
The EFMP director is AMAZING and she actually has seen Olivia in action. She was there basically to observe and facilitate as needed for my rights. She kept quiet most of the time, just listening as we went back and forth between the director and the nurse and myself. I had to keep saying things like, "Ok, let me wrap my mind around this and make sure I understand you - You are telling me that you are uncomfortable with your ability to supply her needs and take care of her at the CDC and you want me to take her to a Family Home Provider instead" (which is illegal). The nurse would come back with, "Well, I just think you would be happier if you took her to a Family Home Provider who could provide a more individualized level of care because there are less children in the home". It was all very tricky and subtle how they worded things.
I really wanted her in the CDC for several reasons, not the least of which was socialization with other children her age. We've had to keep her seperated for so long because of health issues, I really think she needs to be around a lot of other little kids close to her age. Finally the EFMP rep stepped in and said one sentence and they sort of all fell in line and agreed to have her come to the CDC. They want me to put her in care this Friday for a trial run while I am still close by in case anything happens they have questions about. It's all so strange to me - they called me 3 times after I left the meeting to ask questions about her development level and kind of sounding panicky every time I gave an answer.
Here are some of the issues they had:
Can she sit in a chair (the other kids sit in chairs and self feed)?
Can she drink from a sippy cup?
Can she have the lunch they provide?
Can she eat solids?
Can she follow their schedule?
Can she sit up?
Can she feed herself?
They really didn't give me the impression they were too thrilled with having to do the extra work it would take to have Olivia there - feed her by bottle, feed her by spoon, put her in a high chair, etc. They actually asked me to bring my own high chair. I am providing the food, the spoon, the milk in a thermos already mixed in bottles, the bib for her.... It sounds like this huge deal and really it's no different from having to watch an 11-12 month old.
The Marine Corps Special Needs Evaluation Review Team (SNERT) consists of qualified personnel whose goal is to make an assessment of the accommodations necessary for a special needs child to participate in Marine Corps Children, Youth and Teen Programs (CYTP) and to determine the most appropriate placement for the child. An installation’s SNERT reports to the installation commander and includes, at a minimum, the CYTP Administrator, EFMP Coordinator, medical personnel, parent(s), the child or youth when appropriate, and other applicable CYTP or community agency personnel.
Children who require medical or educational intervention, assistance, or other accommodations are eligible for services. This includes, but is not limited to, children with autism, asthma, allergies, hearing impairment, orthopedic impairment, developmental delays, behavioral issues, specific learning disablement, and mental, physical, or emotional challenges. Upon request for services, the SNERT will make an assessment of the accommodations necessary for a special needs child to participate and determine the most appropriate placement.
Parents can read Marine Corps Order P1710.30E, "Marine Corps Children, Youth and Teen Programs," 24 June 2004 for more information on SNERT.
Currently with my husband deployed, my mom is my respite care provider. She's received permission from his CO and housing to live on base with me and it has been invaluable for Olivia's care and therapy. I think she is MUCH farther ahead than she would be otherwise because of the level of care and therapy she is receiving from both of us on a daily basis.
I want to take her out to thank her, and give us both a day of fun filled relaxation with no kids. But.. SHE is my respite care provider. So I looked into putting Olivia in the CDC (Child Development Center) on base for drop in care and found that I needed to do a SNERT to enroll her.
It was a little surreal - kind of like an IEP meeting for preschoolers. The director of the CDC was there; a representative from the EFMP office (Exceptional Family Member Program); and a nurse. I was told that a representative from EDIS (Educational Developmental Intervention Services) would also be there, but I think she was unavailable on such short notice.
The director interviewed me and asked me about Olivia's medical history and potential issues. It was hard to explain what was wrong with Olivia, because while I was stating the facts, she actually does better day to day right now than it sounded. It was sort of the feeling you get as a special needs parent when you think your child is doing great and your life has settled into "normal" right up until you go to the doctor's office and they make you fill out the questionnaire on developmental milestones - and you realize how far behind she really is. The director sounded really anxious and nervous, and every time I told her something it seemed she worried more and more. The CDC's have only recently begun accepting federal money for their food programs and so they have to abide by the disability inclusion laws for education. Prior to that, they did not.
The nurse kept trying to talk me into having Olivia taken care of at a local family provider home on base - basically a home child care business run by a mom. There are quite a few providers on both bases available for this option.
The EFMP director is AMAZING and she actually has seen Olivia in action. She was there basically to observe and facilitate as needed for my rights. She kept quiet most of the time, just listening as we went back and forth between the director and the nurse and myself. I had to keep saying things like, "Ok, let me wrap my mind around this and make sure I understand you - You are telling me that you are uncomfortable with your ability to supply her needs and take care of her at the CDC and you want me to take her to a Family Home Provider instead" (which is illegal). The nurse would come back with, "Well, I just think you would be happier if you took her to a Family Home Provider who could provide a more individualized level of care because there are less children in the home". It was all very tricky and subtle how they worded things.
I really wanted her in the CDC for several reasons, not the least of which was socialization with other children her age. We've had to keep her seperated for so long because of health issues, I really think she needs to be around a lot of other little kids close to her age. Finally the EFMP rep stepped in and said one sentence and they sort of all fell in line and agreed to have her come to the CDC. They want me to put her in care this Friday for a trial run while I am still close by in case anything happens they have questions about. It's all so strange to me - they called me 3 times after I left the meeting to ask questions about her development level and kind of sounding panicky every time I gave an answer.
Here are some of the issues they had:
Can she sit in a chair (the other kids sit in chairs and self feed)?
Can she drink from a sippy cup?
Can she have the lunch they provide?
Can she eat solids?
Can she follow their schedule?
Can she sit up?
Can she feed herself?
They really didn't give me the impression they were too thrilled with having to do the extra work it would take to have Olivia there - feed her by bottle, feed her by spoon, put her in a high chair, etc. They actually asked me to bring my own high chair. I am providing the food, the spoon, the milk in a thermos already mixed in bottles, the bib for her.... It sounds like this huge deal and really it's no different from having to watch an 11-12 month old.
Monday, March 7, 2011
It's official - I'm twice as stressed as everyone else...
Did you know that mothers of children with Prader-Willi Syndrome have up to twice as much stress when compared with parents of other developmentally disabled children? In addition, parents with disabled children already report a 10% higher number of stressors then the average parent. Not to mention a recent American Psychological Association poll that found that one-third (32%) of parents in general report that their stress levels are extreme!
This is from the Foundation for Prader Willi Research - Canada.
I heard that statistic very early on after Olivia was diagnosed with PWS. At the time, I found it very hard to believe that a PWS parent could be more stressed than any other parent of a disabled child. It smacked of hubris to me and I thought that either the person quoting it misheard the original information, left out a word, or just "felt" things were worse.
I don't believe that anymore. Although it feels kind of wrong for me to admit this - I've never been a big fan of the whole game of "my stress is worse than your stress" or "my problem is worse than your problem" or worst of all, "my husband's deployment is worse on me than your husband's deployment is on you"; I can understand a little bit of why PWS feels a little worse. While it is not true in all cases, there are some things unique to PWS that are not encountered in any other disability that I am currently aware of.
It's the food. Always the food.
If you think we're a food obsessed culture now, wait until you have a food related disorder and then you will realize you can barely go even a few minutes without thinking, hearing, seeing, smelling food in some way. Everyone is talking about food - using food for motivation or discipline; as metaphor for hospitality, love or caring; as a tool for health or fitness; for familial or community bonding; for tradition or cultural reference; for hobby and relaxation; for business deals and entertainment; as a story-telling tool in parables and books... the list goes on.
In our family, even before Olivia, we really limited the amount of sweets and snacks we have in the house. I don't really buy junk food; and by this I mean cookies, chips, candy, snack crackers, cake or sweet bread mixes, etc. It's not that we never ate those things, but they were eaten sparingly and rarely, and mostly at other people's houses. About two years ago I started collecting all the candy that Amelia was being given at various functions and put it in a clear plastic shoebox. Every time she received treats, she could eat one or two and the rest went into the shoebox for special occasions. I've periodically dumped out a bunch of it in the trash and yet the box has never gone empty.
Even though Olivia doesn't have the extreme hunger YET, I find myself constantly confronted with situations now that I find stressful because I am so much more aware of food that I never noticed before. Today at church really brought this home to me.
We go to church and there are candy dishes everywhere, filled with peppermints. I can't get into church without fear that my 4 year old will have a screaming fit because she sees candy and wants a piece of it. I want to tell her no, but I created a bad habit/expectation by letting her have one piece of candy when she comes in the door so I can speak in peace to the people around me. If it was never there at all, I would have NO problem with her whatsoever, I could still speak in peace. It's the temptation that causes a problem for my four year old.
Then once in church, there are donuts at the back. They are such a treat because we never buy them, and I allow her to have one donut before we sing for praise and worship time. She constantly asks if she can have one more but always accepts the answer is no.
I take her to her Sunday School class, and the first class that is her age rewards the kids with a small amount of goldfish. I don't like it, but at least it's not sugar.
I started going earlier, and last Sunday was shocked when I went to pick her up from her new class when I found out she had a paper bag full of candy and other goodies she "earned" by answering questions. A sack. Maybe it was 6 things, but when you need a sack to carry the sugar, I think it's too much. The teacher told me it was a special class and that wasn't normal. I didn't know ahead of time that is how things worked and it never occurred to me to ask. I forgot between last sunday and this sunday and she went again to the early class. When it was over, she came running out with more candy for answering questions correctly. Only two pieces this time, but .... then the inevitable questions. Can I have it? Now? If not now, then when?
It's so frustrating because we're only trying to keep her a bit healthier and away from the national average of 122 pounds of sugar eaten yearly per person.
"As little as 100 years ago, it is estimated that Americans ate around one pound of sugar a year." (Dr. Scott Olsen) Teens eat even more sugar than adults, and we want to establish healthy habits for her very early on.
It will be easier to stick to what is healthy than to retrain her as an adult to not eat unhealthy foods... think of your own diets and food downfalls.
So all that is only the background for what comes next.
It's everywhere. EVERY. WHERE. So pretend that you have a crack cocaine addict that is attached to you with handcuffs. You can not go anywhere without this addict by your side. It is your job to make sure that the cocaine addict behave him or herself at all times; use proper manners; use appropriate language and social skills; have appropriate hygiene; be pleasant and fun to be around.
Everywhere you go, someone offers you some cocaine. You don't have the same problems with it, so you just say no. It's left on the counter in front of you in case you change your mind. You open a book to read a story to your companion and there are pictures of cocaine everywhere, stories with long descriptions of how wonderful cocaine is as part of the storyline or even background plot. Listen to the radio and you will hear whole programs on cocaine.... you get the idea. All the while your companion is expected to not indulge, to control him or herself, to behave like a normal human being with no problems.
Only it doesn't happen.
How do you operate as a normal family around the dinner table, laughing and talking and preparing dinner together when you have to watch like a hawk what your PWS child is doing in the kitchen? It takes a joyful, everyday event and creates a tension and stress filled one. Even if you have a system in place, I would imagine how guilty I would feel knowing I won't be able to feed Olivia as much as she wants to eat. It has the potential to create eating disorders in other family members that would never have existed otherwise because of the ritual/cautions needed around food of all kinds and the tensions that result from that.
How do you go for family vacations with your extended family? How do you stay at houses that don't have food locked up? Will I ever be able to visit my brothers or my sisters or my parents at their house again without stress of where she is at every minute? How do I go grocery shopping when I have to take her with me?
Most of all, how do I balance my love of cooking with my oldest daughter (4 year old Amelia) and all that we will cook together in the future in shared companionship - creating an intimacy in that area that Olivia and I will never know together - without making Olivia feel left out and left behind?
Not only do you have to control their eating habits and calories, you have to control your own and that of your family. You can't indulge in an ice cream sunday for dessert for the whole family when your child can only have 700 calories total for the day. In order for your child not to feel left out or a burden or unfairly penalized, everyone eats the same thing; only you have a few more calories on your plate. The food becomes much healthier but you will leave behind a lot of old family favorites and traditions. You can't just swing into a restaurant or fast food place when you are running late because the caloric content is too much for your child.
In the end, I think the intense stress comes from a variable that shows up in so many unexpected places, in so many unexpected ways, and yet is essential for both physical and social life.
I don't think I explained this very well as I read over this but I'm tired and done for tonight. And I am so tired of seeing junk food and candy EVERYWHERE. And a whole other rant.. why do we reward kids with food anyway??? ... saved for another time.
***EDITED TO ADD: I've had so many comments, both public and private, on this asking to link to this page. You are welcome to link to it; thank you so much. Please let me know where you link; I love to read other's blogs. It helps to know it's not just me that feels this way.
Wednesday, March 2, 2011
Everything Becomes a Therapy Tool
Olivia stood for 2 seconds yesterday and for 6 seconds today, barefooted. She's 18 months old.
She's fascinated by the open dishwasher. When I'm loading it, I have to be very careful of where she's at - she'll hear it and crawl to it as fast as her legs can carry her. Yesterday I had a blast watching her have fun pulling the clean dishes out of the bottom rack - they were simple plastic things like strainers, measuring cups, etc. and laughing.
I know I should have stopped her, but I kept thinking, "THIS is GREAT therapy!!!" She would pull herself to stand, reach inside and grab something with one hand, while barely holding on with the other. She was shifting her weight from side to side and balancing her core. The bottom rack would slide in as she leaned forward, so she had to figure out how to simultaneously pull it out, hold her balance and grab. She reached for a whisk she really wanted and stood for two seconds putting both hands on the whisk before plopping down. Today she grabbed the same whisk again and managed to balance herself while holding it for six seconds.
Yes, I stood there and counted and waited for her to fall.
It's amazing the development I took for granted in Amelia comes in so many tiny steps when you see it in slow motion, as I do with Olivia.
She's fascinated by the open dishwasher. When I'm loading it, I have to be very careful of where she's at - she'll hear it and crawl to it as fast as her legs can carry her. Yesterday I had a blast watching her have fun pulling the clean dishes out of the bottom rack - they were simple plastic things like strainers, measuring cups, etc. and laughing.
I know I should have stopped her, but I kept thinking, "THIS is GREAT therapy!!!" She would pull herself to stand, reach inside and grab something with one hand, while barely holding on with the other. She was shifting her weight from side to side and balancing her core. The bottom rack would slide in as she leaned forward, so she had to figure out how to simultaneously pull it out, hold her balance and grab. She reached for a whisk she really wanted and stood for two seconds putting both hands on the whisk before plopping down. Today she grabbed the same whisk again and managed to balance herself while holding it for six seconds.
Yes, I stood there and counted and waited for her to fall.
It's amazing the development I took for granted in Amelia comes in so many tiny steps when you see it in slow motion, as I do with Olivia.
Wednesday, February 23, 2011
Favorite Therapy Tools for the first year of PWS
When Olivia first came home from the hospital, she could not move purposefully. We had tons of physical, occupational, cognitive and speech therapy for her. All the therapists would give us a different area to work on during the week - homework so to speak. Our cognitive therapist gave us this book so I could find a way to sing and play with her. It was a great book - shows the actions to take with the words and lots of childhood rhymes. One of the best things about it was that my brain was overloaded with all the information I was learning about PWS, and my physical time was taken up with taking care of her. I had very little mental or emotional energy left over just to play, and I definitely had zero creativity. This book was great for that.
She also gave us the bird. It's a very old fashioned toy, and if you ever see it, snatch it up. It has a deep toned, very pleasant sounding bell inside that dings when the bird is moved in any direction. It's extremely easy to move. In order to encourage Olivia to move, I used to place it between her thighs as close to her crotch as I could as she laid on her back. Again, this was in the not moving much at all stage. She couldn't lift her head nor did she have the strength to hold on to even the simplest of toys, literally. Her legs were the strongest part of her and they would occasionally move, or she might squirm with the slightest of movements. So anytime any part of her moved, this bird would chime. It was an immediate feedback for the tiniest of movement on her part. She loved this bird, and it would come into play during therapy in all different ways during the past year.
The other toy with the multiple birds is extremely easy to move. With the slightest touch, the birds twirl and the toy rolls. Again, this provided excellent feedback to any of her movements and encouraged her to move when she would accidentally touch it.
The last toy that is her favorite is not pictured here. It was examining room table paper - the paper from the table at the doctor's office. I noticed that every time we took her there (weekly for the first two months), it seemed to be the only time she really moved was on that paper. It's so noisy and crinkly, and again it provided loud, fun, immediate feedback to her movements. So I asked them if they would give me some of that paper to take home and they gave me a small roll of it. I would tear off sheets of it and lay her on it for tummy time or for back time and watch her try to move more to make noise.
Time to move on, toys!!! I donated them all to EDIS. She's on to bigger and better things.
She also gave us the bird. It's a very old fashioned toy, and if you ever see it, snatch it up. It has a deep toned, very pleasant sounding bell inside that dings when the bird is moved in any direction. It's extremely easy to move. In order to encourage Olivia to move, I used to place it between her thighs as close to her crotch as I could as she laid on her back. Again, this was in the not moving much at all stage. She couldn't lift her head nor did she have the strength to hold on to even the simplest of toys, literally. Her legs were the strongest part of her and they would occasionally move, or she might squirm with the slightest of movements. So anytime any part of her moved, this bird would chime. It was an immediate feedback for the tiniest of movement on her part. She loved this bird, and it would come into play during therapy in all different ways during the past year.
The other toy with the multiple birds is extremely easy to move. With the slightest touch, the birds twirl and the toy rolls. Again, this provided excellent feedback to any of her movements and encouraged her to move when she would accidentally touch it.
The last toy that is her favorite is not pictured here. It was examining room table paper - the paper from the table at the doctor's office. I noticed that every time we took her there (weekly for the first two months), it seemed to be the only time she really moved was on that paper. It's so noisy and crinkly, and again it provided loud, fun, immediate feedback to her movements. So I asked them if they would give me some of that paper to take home and they gave me a small roll of it. I would tear off sheets of it and lay her on it for tummy time or for back time and watch her try to move more to make noise.
Time to move on, toys!!! I donated them all to EDIS. She's on to bigger and better things.
Monday, February 21, 2011
It's not the first time, and it won't be the last...
From PWS Mom blog:
She asked what Prader-Willi was and I briefly explained that it is something that affects the brain and makes it so you never feel full.
She said laughing,"Maybe that's what I have."
I kind of chuckled to be polite but I still cringe every time someone says that to me. They are joking of course. But I don't think it's funny.
This really hit home with me. I've had this exact same conversation and thoughts a few times already with people who mean well.
I cringe also... for the person who said it; for my daughter; and for the person I used to be who might have said the same thing - not knowing the sickening reality of PWS and not aware of how hurtful a light comment can sometimes be.
Thursday, February 17, 2011
Crazy Communication Milestone Day!
This past year and a half has been difficult in more ways than one. Only recently did I realize that I really had hardly ever written down any milestone that Olivia has reached; so when I look back I am only sure of the specific date for a few things. I'm really going to remedy that going forward.
Today was just a strange day in a really good way. Livi has been on the cusp of doing a lot of things - ever since she started crawling the Monday before Christmas, it seems that her motor skills have just exploded. It was as if her body and her brain finally realized she could move and do so much more than just sit there. It took her almost a week to try and venture out of the area we did her therapy in all the time. At first it was confusing to me, until I realized it was a sort of learned helplessness... she had always been in that area for stimulation and didn't realize she could go farther. To combat that, we kept putting her in other areas of the house with things that crinkled (her favorites) a little out of her reach in the hallway outside the room. Now it's thrilling to see her try and follow us from room to room. She still doesn't do it as much as I would like, but it's neat to know she wants to be with us.
Earlier this week, Amelia was playing dragon and roaring alot. Sunday, right after Mia roared, so did Livie - who was right next to her. It was so funny! She did it several times after Mia, and then today as I was telling the OT the story and imitating what Livie did, she roared again.
About two-three weeks ago at a play date, two of the moms said they heard Olivia say "baby" in context, but I didn't hear it then or since. Between speech therapy and normal life today, she said baby, bye bye bear, bye bye bunny, grandma, and made the sign for eat in context and several times. She doesn't really say mama a lot, but she has been able to say that one for a while. She also has tried to say "eat" but with no sound coming out. It looks sort of like a monkey grin - those real cheesy wide grins that squish the eyes shut. She does it after I say, "eat, eat" to her and I was emphasizing the facial expression - drawing out the "e". Try it and you will know what I am talking about. It's kind of funny that she mimics the movement but can't quite get sound to come out. All of these words are approximations, but they are in context and I will take it!
Our speech therapist is really an amazing woman. We have been so blessed with our therapists. She has so much knowledge and explains so much to us. Janet told us that universally, once children get about 25 words in their vocabulary, they begin stringing them together in 2 word sentences. It's neat to see Olivia starting this process. It makes me wonder if she has the other words in her vocabulary but simply can't vocalize them enough for us to understand what they are. I'm also reminded that with PWS, the receptive speech is much, much stronger than the expressive speech.
She has been wanting to walk so badly... she hates to sit down and actively fights against it when we are holding her up and need her to sit in a chair, on the floor or on our laps. She tries to climb up our shoulders and bodies and stands on tippy toes at the windows trying to reach the blinds to play with them. She bounces constantly and has been pulling herself to stand everywhere trying to reach things. She's actually quite tall for a PWS child - 31 plus inches, 22 plus pounds and 17 months old. She's WAY more inquisitive than I remember Amelia being at this stage. Either that, or I have way more stuff on the counters now that she could pull off and I just notice it more.
Olivia also walked today with a toy walker! Our occupational therapist brought a Vtech Learning Walker she picked up from the local CAPA store, and Olivia took about 4 wobbly steps on it. She would go about 3-4 steps with it slowly, then it got away from her and she would sink to her knees, pull herself up and then try again. She was going from the therapist to myself and back again. She was exhausted after therapy was over and slept an hour longer than normal for her nap.
This time a year ago, I definitely did NOT see this happening in my future... after so many months of Olivia really not moving or talking much, it was hard to hold on to the promise that these kids do eventually gain a rough form of motor control, and some of the PWS kids do even better than that. I'm so grateful we were able to start growth hormones at 4 months, and I wish we could have started them even earlier. We just didn't have an endo that was current on PWS at the time, but now we have a great one.
Today was just a strange day in a really good way. Livi has been on the cusp of doing a lot of things - ever since she started crawling the Monday before Christmas, it seems that her motor skills have just exploded. It was as if her body and her brain finally realized she could move and do so much more than just sit there. It took her almost a week to try and venture out of the area we did her therapy in all the time. At first it was confusing to me, until I realized it was a sort of learned helplessness... she had always been in that area for stimulation and didn't realize she could go farther. To combat that, we kept putting her in other areas of the house with things that crinkled (her favorites) a little out of her reach in the hallway outside the room. Now it's thrilling to see her try and follow us from room to room. She still doesn't do it as much as I would like, but it's neat to know she wants to be with us.
Earlier this week, Amelia was playing dragon and roaring alot. Sunday, right after Mia roared, so did Livie - who was right next to her. It was so funny! She did it several times after Mia, and then today as I was telling the OT the story and imitating what Livie did, she roared again.
About two-three weeks ago at a play date, two of the moms said they heard Olivia say "baby" in context, but I didn't hear it then or since. Between speech therapy and normal life today, she said baby, bye bye bear, bye bye bunny, grandma, and made the sign for eat in context and several times. She doesn't really say mama a lot, but she has been able to say that one for a while. She also has tried to say "eat" but with no sound coming out. It looks sort of like a monkey grin - those real cheesy wide grins that squish the eyes shut. She does it after I say, "eat, eat" to her and I was emphasizing the facial expression - drawing out the "e". Try it and you will know what I am talking about. It's kind of funny that she mimics the movement but can't quite get sound to come out. All of these words are approximations, but they are in context and I will take it!
Our speech therapist is really an amazing woman. We have been so blessed with our therapists. She has so much knowledge and explains so much to us. Janet told us that universally, once children get about 25 words in their vocabulary, they begin stringing them together in 2 word sentences. It's neat to see Olivia starting this process. It makes me wonder if she has the other words in her vocabulary but simply can't vocalize them enough for us to understand what they are. I'm also reminded that with PWS, the receptive speech is much, much stronger than the expressive speech.
She has been wanting to walk so badly... she hates to sit down and actively fights against it when we are holding her up and need her to sit in a chair, on the floor or on our laps. She tries to climb up our shoulders and bodies and stands on tippy toes at the windows trying to reach the blinds to play with them. She bounces constantly and has been pulling herself to stand everywhere trying to reach things. She's actually quite tall for a PWS child - 31 plus inches, 22 plus pounds and 17 months old. She's WAY more inquisitive than I remember Amelia being at this stage. Either that, or I have way more stuff on the counters now that she could pull off and I just notice it more.
Olivia also walked today with a toy walker! Our occupational therapist brought a Vtech Learning Walker she picked up from the local CAPA store, and Olivia took about 4 wobbly steps on it. She would go about 3-4 steps with it slowly, then it got away from her and she would sink to her knees, pull herself up and then try again. She was going from the therapist to myself and back again. She was exhausted after therapy was over and slept an hour longer than normal for her nap.
This time a year ago, I definitely did NOT see this happening in my future... after so many months of Olivia really not moving or talking much, it was hard to hold on to the promise that these kids do eventually gain a rough form of motor control, and some of the PWS kids do even better than that. I'm so grateful we were able to start growth hormones at 4 months, and I wish we could have started them even earlier. We just didn't have an endo that was current on PWS at the time, but now we have a great one.
Monday, February 14, 2011
Top Ten Good Things About Prader Willi Syndrome Babies
1) When she was first born and didn't make any sound and slept anytime she wasn't being stimulated, it was easy to take a nap. Theoretically. If it wasn't for the enteral pump, bottle feeding for therapy, breast pumping, PT/OT/ST, eating and taking a shower once a week, I would have definitely been able to sleep.
2) I could take her with me anywhere. She never cried, moved or made a noise. People who didn't know me told me I was a great mom with an amazing baby and I just smiled and said, "YES, I AM". Let them envy. I have plenty of my own for their baby's healthy screams.
3) She could fall asleep anytime, anywhere. I never worried about not scheduling therapy during her naptimes, because she fell asleep anytime she wasn't being stimulated. I figured she got enough sleep, get her up and get her to work. The more therapy, the merrier.
4) She was very snuggly. She never tried to wriggle out of my arms.
5) She would let anyone hold her without crying. So I told everyone, "See, she really likes you!!" All she cared was that she had physical contact with someone. Although to be honest, she has always shown a clear preference for men. Hussy.
6) She has a high pain tolerance. So when I dropped her on her head, she only cried for about 5 seconds.
Kidding. She cried for 10. OH, still kidding... I didn't drop her on her head. Chill. I have accidentally poked or prodded her in the process of changing a diaper or moving her around while trying to wrestle a 4 year old at the same time - you moms know what I am talking about - and with no real reaction.
7) She'll eat anything now that she's on baby food. So I feel like a great mom, feeding her a wide variety of fruits, vegetables and meats with no protest. She only "kind of" spits out things by smooshing it out her mouth, but it's mostly bland food. She has a good palate at an early age. She loves mommy's cooking. She is the only one in the family who doesn't complain when I make collard greens.
8) Since she was failure to thrive, we're on Neosure now that my year of pumping milk is over with and it's paid for by insurance. Regular milk is expensive. Thanks, Tricare.
9) I never had to get up in the middle of the night every 2 hours. It was more like every few minutes to listen to her breathe, check her temperature to make sure her body was holding temp and reposition her head and body so she wasn't too floppy. I learned to sleep with one ear open until she stabilized at home. I never woke up to screaming cries, but the sound of the alarm on the enteral pump going off to tell me it was time to pump milk and feed her again.
Wait, wasn't that supposed to be a good thing? Oh well. Fail for #9.
10) When she finally smiled at me almost a year after she was born, I knew it wasn't gas. She was smiling AT ME, and I EARNED THAT SMILE!
2) I could take her with me anywhere. She never cried, moved or made a noise. People who didn't know me told me I was a great mom with an amazing baby and I just smiled and said, "YES, I AM". Let them envy. I have plenty of my own for their baby's healthy screams.
3) She could fall asleep anytime, anywhere. I never worried about not scheduling therapy during her naptimes, because she fell asleep anytime she wasn't being stimulated. I figured she got enough sleep, get her up and get her to work. The more therapy, the merrier.
4) She was very snuggly. She never tried to wriggle out of my arms.
5) She would let anyone hold her without crying. So I told everyone, "See, she really likes you!!" All she cared was that she had physical contact with someone. Although to be honest, she has always shown a clear preference for men. Hussy.
6) She has a high pain tolerance. So when I dropped her on her head, she only cried for about 5 seconds.
Kidding. She cried for 10. OH, still kidding... I didn't drop her on her head. Chill. I have accidentally poked or prodded her in the process of changing a diaper or moving her around while trying to wrestle a 4 year old at the same time - you moms know what I am talking about - and with no real reaction.
7) She'll eat anything now that she's on baby food. So I feel like a great mom, feeding her a wide variety of fruits, vegetables and meats with no protest. She only "kind of" spits out things by smooshing it out her mouth, but it's mostly bland food. She has a good palate at an early age. She loves mommy's cooking. She is the only one in the family who doesn't complain when I make collard greens.
8) Since she was failure to thrive, we're on Neosure now that my year of pumping milk is over with and it's paid for by insurance. Regular milk is expensive. Thanks, Tricare.
9) I never had to get up in the middle of the night every 2 hours. It was more like every few minutes to listen to her breathe, check her temperature to make sure her body was holding temp and reposition her head and body so she wasn't too floppy. I learned to sleep with one ear open until she stabilized at home. I never woke up to screaming cries, but the sound of the alarm on the enteral pump going off to tell me it was time to pump milk and feed her again.
Wait, wasn't that supposed to be a good thing? Oh well. Fail for #9.
10) When she finally smiled at me almost a year after she was born, I knew it wasn't gas. She was smiling AT ME, and I EARNED THAT SMILE!
Saturday, February 12, 2011
Chicken Pox
Olivia has chicken pox and a fever of 100.4 earlier today. The chicken pox is very mild and this version apparently an attenuated virus, which is good. I'm thrilled at several things...
She isn't too fussy, just tired. Doesn't feel uncomfortable - because she has a reduced sensitivity to pain, I don't think she really notices anything itchy.
She's very snuggly and keeps reaching for my pants leg to be picked up. :)))))))))
She had a fever. A normal fever. I wonder what this means for us... it's not typical that PWS children have fevers and the doc said a low fever was typical for this type of chicken pox. It's actually great news that she had a fever in my mind. I don't know enough about it to know otherwise, but it feels like it's a good thing.
I was supposed to make a meal for Family Promise tonight and be a dinner host... couldn't because we're not supposed to be around kids for 48 hours. I made the meal and dropped it off, went home to do some work and then went back to pick up my containers two hours later. I should be sleeping right now.
She isn't too fussy, just tired. Doesn't feel uncomfortable - because she has a reduced sensitivity to pain, I don't think she really notices anything itchy.
She's very snuggly and keeps reaching for my pants leg to be picked up. :)))))))))
She had a fever. A normal fever. I wonder what this means for us... it's not typical that PWS children have fevers and the doc said a low fever was typical for this type of chicken pox. It's actually great news that she had a fever in my mind. I don't know enough about it to know otherwise, but it feels like it's a good thing.
I was supposed to make a meal for Family Promise tonight and be a dinner host... couldn't because we're not supposed to be around kids for 48 hours. I made the meal and dropped it off, went home to do some work and then went back to pick up my containers two hours later. I should be sleeping right now.
Exhausted
It's been an extremely busy month. Every day I want to sit and write about what we've been doing but all I do is surf and let my brain veg when I finally get a chance to sit down.
Last Friday Mom and I drove the girls to Roanoke, Virginia to see my niece in a play at Hollins University. What was a 7 hour drive ended up taking us 2 days. My brand new van broke down right outside of Charlotte, NC. Thank goodness for the wonderful people at Hendrick Honda... although it was after hours (7 pm) and the service department was closed, they found a mechanic to drive out to where we were and check out the van. We definatelly needed a tow according to him.
Mom waited for the van to get towed almost 4 hours... the first tow truck driver threw the keys at her when she asked him why he was taking the plastic covering off the extra key. Crazy! The mechanic drove myself, Olivia and Amelia back to the dealer in a loaner van, where we dropped him off and found a place to stay for the night. I checked in, dropped our stuff off and tried to get the girls to go to sleep. They finally fell asleep a little after midnight, just in time to get 15 minutes of rest before I had to wake them up to go get mom. Poor Amelia... she was as floppy as Olivia when she was a baby. I could NOT get her to wake up and ended up carrying a 4 year old in one arm and a 17 month old in a baby carrier in the other arm down to the first floor and out the door. I dropped their blankies in the freezing rain and generally had a rough time.
We finally got the girls back into bed after picking up mom; and they worked on our car first the next day. When they realized they couldn't fix it quickly, they gave us another vehicle, this time a rental, and had us go on our merry way. We booked it to Hollins and made it just in time to see the last 30-45 minutes of Katie's play. She has no idea how hard we worked every angle to get there on time. It was great to see her.
Finally home late Sunday night. What was supposed to be a quick trip turned out to be one of the longest and hardest short trips I've ever taken.
Thank goodness Olivia has Prader Willi Syndrome. She was calm and quiet the whole time :) I guess there's something to be said for a baby who doesn't ever really get fussy. I hear she will make up for it later, but I am enjoying the flexibility for now.
The bad part of the trip is that it was so exhausting, somehow I misplaced my camera or it fell somewhere and I didn't notice it. I'm missing a disk that was stored in there with some priceless pics of Amelia as a baby. Don't ask me why I was dumb enough to put them in the storage part of the camera case. I'm hoping that I find it somehow.
Last Friday Mom and I drove the girls to Roanoke, Virginia to see my niece in a play at Hollins University. What was a 7 hour drive ended up taking us 2 days. My brand new van broke down right outside of Charlotte, NC. Thank goodness for the wonderful people at Hendrick Honda... although it was after hours (7 pm) and the service department was closed, they found a mechanic to drive out to where we were and check out the van. We definatelly needed a tow according to him.
Mom waited for the van to get towed almost 4 hours... the first tow truck driver threw the keys at her when she asked him why he was taking the plastic covering off the extra key. Crazy! The mechanic drove myself, Olivia and Amelia back to the dealer in a loaner van, where we dropped him off and found a place to stay for the night. I checked in, dropped our stuff off and tried to get the girls to go to sleep. They finally fell asleep a little after midnight, just in time to get 15 minutes of rest before I had to wake them up to go get mom. Poor Amelia... she was as floppy as Olivia when she was a baby. I could NOT get her to wake up and ended up carrying a 4 year old in one arm and a 17 month old in a baby carrier in the other arm down to the first floor and out the door. I dropped their blankies in the freezing rain and generally had a rough time.
We finally got the girls back into bed after picking up mom; and they worked on our car first the next day. When they realized they couldn't fix it quickly, they gave us another vehicle, this time a rental, and had us go on our merry way. We booked it to Hollins and made it just in time to see the last 30-45 minutes of Katie's play. She has no idea how hard we worked every angle to get there on time. It was great to see her.
Finally home late Sunday night. What was supposed to be a quick trip turned out to be one of the longest and hardest short trips I've ever taken.
Thank goodness Olivia has Prader Willi Syndrome. She was calm and quiet the whole time :) I guess there's something to be said for a baby who doesn't ever really get fussy. I hear she will make up for it later, but I am enjoying the flexibility for now.
The bad part of the trip is that it was so exhausting, somehow I misplaced my camera or it fell somewhere and I didn't notice it. I'm missing a disk that was stored in there with some priceless pics of Amelia as a baby. Don't ask me why I was dumb enough to put them in the storage part of the camera case. I'm hoping that I find it somehow.
Monday, January 24, 2011
Before and After
The house smells so good every time I walk into it today - garlic, onions, bacon - too bad none of it was for us! I often volunteer to cook meals for people who need them. I'm on a committee at our church and also for the base I live on to deliver fresh, hot meals. When our church does Family Promise, I volunteer for a shift and cook for them also. I'm often making a bit extra and handing it out to whomever is stopping by that day - Sunday when I made corn chowder, we invited a friend of Mia's over to play and they stayed for dinner. Sometimes its my friends, and sometimes it's the excellent therapists that end up walking away with a bite or two of some goodie.
Today I made a meal for a beautiful woman who has cared for Amelia and other children during church services. I really wanted to be able to give back to her during a time of need. I made sweet cornbread, collard greens, and more beans and sausage to drop off. I never thought I would like collard greens. I've had them a time or two and they just seemed so bland to me. But it turns out with enough bacon and onions, along with a touch of garlic, anything tastes scrumptious. I sweat those items first, then jammed the greens into the pot on top. Sprinkle kosher salt, cracked pepper, and sugar and put the lid on to let them cook away. I think most people add a bit of stock but the lid was heavy and they had their own liquid. They probably would have tasted good with a bit of heat and some acid - like maybe some cayenne or red pepper flakes, very subtle; or garnished afterwards with a shake or two of tabasco and/or vinegar.
I also cooked up some pears for Olivia and hummus for home group (bible studies in someone's home). I made another dip for home group tonight out of stuff hanging out in my fridge. 2 blocks of cream cheese, big handful of sun dried tomatoes, a jar of feta in oil (minus the oil), 2 garlic cloves, a tiny glad container (about 1/4 cup) of pureed basil from my garden a while ago, 4-5 black olives that were left over from a salad the other night. It turned out great. I think it would also make a great stuffing for chicken; or with some roasted red peppers and fresh spinach spread on a hot crepe and folded for a "crepe sandwich" would be YUM.
Every time I cook now, I think of Olivia. Every.Single.Time. It's an awareness I wish I didn't have; sort of like the first time you found out there wasn't Santa Claus. I think to myself... Does this have too many carbs? How many calories are in this dish? How can I keep the flavor and lose the calories?
Will this be the last time I cook this?
No, actually it feels more like the way the world changed September 11, 2001.
The world no longer felt as safe, happy and innocent as it had just seconds before, with the sick feeling that nothing would ever be the same again. It's how my world changed when we got the PWS diagnosis.
Today I made a meal for a beautiful woman who has cared for Amelia and other children during church services. I really wanted to be able to give back to her during a time of need. I made sweet cornbread, collard greens, and more beans and sausage to drop off. I never thought I would like collard greens. I've had them a time or two and they just seemed so bland to me. But it turns out with enough bacon and onions, along with a touch of garlic, anything tastes scrumptious. I sweat those items first, then jammed the greens into the pot on top. Sprinkle kosher salt, cracked pepper, and sugar and put the lid on to let them cook away. I think most people add a bit of stock but the lid was heavy and they had their own liquid. They probably would have tasted good with a bit of heat and some acid - like maybe some cayenne or red pepper flakes, very subtle; or garnished afterwards with a shake or two of tabasco and/or vinegar.
I also cooked up some pears for Olivia and hummus for home group (bible studies in someone's home). I made another dip for home group tonight out of stuff hanging out in my fridge. 2 blocks of cream cheese, big handful of sun dried tomatoes, a jar of feta in oil (minus the oil), 2 garlic cloves, a tiny glad container (about 1/4 cup) of pureed basil from my garden a while ago, 4-5 black olives that were left over from a salad the other night. It turned out great. I think it would also make a great stuffing for chicken; or with some roasted red peppers and fresh spinach spread on a hot crepe and folded for a "crepe sandwich" would be YUM.
Every time I cook now, I think of Olivia. Every.Single.Time. It's an awareness I wish I didn't have; sort of like the first time you found out there wasn't Santa Claus. I think to myself... Does this have too many carbs? How many calories are in this dish? How can I keep the flavor and lose the calories?
Will this be the last time I cook this?
No, actually it feels more like the way the world changed September 11, 2001.
The world no longer felt as safe, happy and innocent as it had just seconds before, with the sick feeling that nothing would ever be the same again. It's how my world changed when we got the PWS diagnosis.
Tuesday, December 14, 2010
Visit with Dr. Miller
Yesterday was a LONG day. We drove to Gainesville, Florida and back - leaving at 5 am and returning at 7 pm. We met someone last year who offered us a place to stay when we went down there next, but I couldn't remember who offered that, so down and back it was!
Dr. Miller is just a fabulous human being. When Rafe and I saw her last year, it was the first time I'd felt any hope for Olivia's condition. She was just so cheerful and upbeat about Livie's future that it eased a knot I didn't even know I had until that moment. This is our third visit, and it was exactly the same. She has this energetic aura about her that is simultaneously intense, enthusiastic, cheerful, and highly skilled. She bounded into the waiting room, recognized me and said, "Is this Olivia?!! I hardly recognized her, she has grown so much!!" Dr. Miller immediately swooped Olivia up into her arms and started cooing and talking to her. She spotted another beautiful PWS child in the waiting area and went over to say hello to them. In a flash she had both children on her lap, hugging and playing with them and introducing them to each other. There was a part of me that had a momentary panic wondering if the other child was sick (Livie's immune system is still compromised) but I trusted that it would be all right. I just have that much faith in Dr. Miller that I felt Olivia couldn't possibly get sick in her arms!! hahaha :)
She is now 21 lbs and 31 inches long, perfect for her stage. We were able to show off how much more she could do - including trying to stand when held upright. I mentioned my concerns about her defecating as much food as she was taking in; asked about her nutrient absorbtion; the difficulty eating lately (it's starting to take between 45-90 minutes to feed her each meal); her W sitting, biotene vs mi paste, and if we could test for carnitine, calcium, etc. I did forget to ask about a sleep study, but I feel that if it was warranted at this time she would have mentioned it.
The answers were both surprising and validating. Surprising because all the issues we've been having with her are innocuous taken seperately, but they apparently added up to some valid issues due to PWS. Validating because sometimes they seemed so minor that I almost felt I was making too big of a deal by commenting on them, but something didnt' seem right to me. Olivia was prescribed carnitine after Dr. Miller accurately told us the behavior of a child who is low on carnitine - sleepy during the meal, almost passing out sometimes, then immediately perking up after they are done eating. DING! Solution one.
Olivia is going to have a lot of bloodwork/tests done in the next few weeks. A fasting lipid test to find out if her body IS absorbing what it needs to. Apparently there is a period of time in some PWS children where they don't absorb much and we have the symptoms of constantly dirty diapers. Dr. Miller mentioned the medical term for it but I can't recall it. It also could be a virus that migrated from the cold she had into her intestinal tract - the time frame is right. She said it sometimes migrates after the cold has run its course and that would be about this past week.
That test is going to be a struggle - it's hard to do a blood draw on PW children, because their low muscle tone prevents the ability to hold the blood vessels in place as well and they "roll" when trying to draw blood. The solution is to hydrate the kids as much as possible before the draw. Olivia is not a big fan of water, and that is the only thing we can give her for 12 hours before the lipid blood test.
We're also doing free T4, IGF1, IGFPB-3, Carnitine Profile, BMP with Ca, Mg, Phos, 25 OH Vitamin D3, Liver Function tests. All of those will be done at MUSC in Charleston since our local hospital doesn't have the ability to do all of them. I'd rather one stick for all of those than 2 if possible.
She recommended theratogs to support her sitting to keep her from the habit of making a W with her legs; and threw in the bonus recommendation of using Sure Steps for her feet. Dr. Miller noticed that Olivia was already standing with assistance and that her feet were pronating. She mentioned that many PT's will wait till she would actually be walking, but she feels that since she is standing on her feet, the earlier she learns the right habits the better it will be for her feet. We were supposed to get a prescription for that also, but in all the hubbub of issues, it was forgotten by both of us. I will just have to email her and ask for it or ask my own pediatrician for it.
I've posted about my Biotene issues on here, but Dr. Miller said we could use the drops only, not the paste or gel, just a couple times a day, especially before speech therapy. Mi Paste is less for salivary issues and more for teeth protection, so it wouldn't work for our needs.
One of the most interesting pieces of news was that right now Olivia is still getting hungry AND satiated. I told her that I felt that Olivia showed definite signs of not wanting to eat more after eating a decent amount and I was worried that we would teach her body to override what little signal it did have and ignore her feelings of hunger/fullness. Dr. Miller agreed. She feels we should no longer try to feed her by the numbers as much as we have been, but instead follow her hunger cues. It was very exciting for me! This doesn't mean she won't suffer from the hyperphagia, but just that she doesn't suffer from it right now. There is still time for a miracle cure! Yes, I know it's a long shot, but I'm finally hoping for one.
We'll be back in 6 months. At the 2 year mark, Dr. Miller will also have a speech therapist there to check for apraxia. If it is there, then the ST will work with us/our ST to correct that.
All in all, it was a great visit. A lot of questions answered and some positive affirmations on how well Olivia is doing. It is hard not to compare your child with others who have the same syndrome and wonder how far behind she is. Considering her extremely rough start, she is much farther along than anyone anticipated. I am so grateful for our Tricare insurance, my family, friends and support systems. Without all that, she would not have achieved as much as she has.
Dr. Miller is just a fabulous human being. When Rafe and I saw her last year, it was the first time I'd felt any hope for Olivia's condition. She was just so cheerful and upbeat about Livie's future that it eased a knot I didn't even know I had until that moment. This is our third visit, and it was exactly the same. She has this energetic aura about her that is simultaneously intense, enthusiastic, cheerful, and highly skilled. She bounded into the waiting room, recognized me and said, "Is this Olivia?!! I hardly recognized her, she has grown so much!!" Dr. Miller immediately swooped Olivia up into her arms and started cooing and talking to her. She spotted another beautiful PWS child in the waiting area and went over to say hello to them. In a flash she had both children on her lap, hugging and playing with them and introducing them to each other. There was a part of me that had a momentary panic wondering if the other child was sick (Livie's immune system is still compromised) but I trusted that it would be all right. I just have that much faith in Dr. Miller that I felt Olivia couldn't possibly get sick in her arms!! hahaha :)
She is now 21 lbs and 31 inches long, perfect for her stage. We were able to show off how much more she could do - including trying to stand when held upright. I mentioned my concerns about her defecating as much food as she was taking in; asked about her nutrient absorbtion; the difficulty eating lately (it's starting to take between 45-90 minutes to feed her each meal); her W sitting, biotene vs mi paste, and if we could test for carnitine, calcium, etc. I did forget to ask about a sleep study, but I feel that if it was warranted at this time she would have mentioned it.
The answers were both surprising and validating. Surprising because all the issues we've been having with her are innocuous taken seperately, but they apparently added up to some valid issues due to PWS. Validating because sometimes they seemed so minor that I almost felt I was making too big of a deal by commenting on them, but something didnt' seem right to me. Olivia was prescribed carnitine after Dr. Miller accurately told us the behavior of a child who is low on carnitine - sleepy during the meal, almost passing out sometimes, then immediately perking up after they are done eating. DING! Solution one.
Olivia is going to have a lot of bloodwork/tests done in the next few weeks. A fasting lipid test to find out if her body IS absorbing what it needs to. Apparently there is a period of time in some PWS children where they don't absorb much and we have the symptoms of constantly dirty diapers. Dr. Miller mentioned the medical term for it but I can't recall it. It also could be a virus that migrated from the cold she had into her intestinal tract - the time frame is right. She said it sometimes migrates after the cold has run its course and that would be about this past week.
That test is going to be a struggle - it's hard to do a blood draw on PW children, because their low muscle tone prevents the ability to hold the blood vessels in place as well and they "roll" when trying to draw blood. The solution is to hydrate the kids as much as possible before the draw. Olivia is not a big fan of water, and that is the only thing we can give her for 12 hours before the lipid blood test.
We're also doing free T4, IGF1, IGFPB-3, Carnitine Profile, BMP with Ca, Mg, Phos, 25 OH Vitamin D3, Liver Function tests. All of those will be done at MUSC in Charleston since our local hospital doesn't have the ability to do all of them. I'd rather one stick for all of those than 2 if possible.
She recommended theratogs to support her sitting to keep her from the habit of making a W with her legs; and threw in the bonus recommendation of using Sure Steps for her feet. Dr. Miller noticed that Olivia was already standing with assistance and that her feet were pronating. She mentioned that many PT's will wait till she would actually be walking, but she feels that since she is standing on her feet, the earlier she learns the right habits the better it will be for her feet. We were supposed to get a prescription for that also, but in all the hubbub of issues, it was forgotten by both of us. I will just have to email her and ask for it or ask my own pediatrician for it.
I've posted about my Biotene issues on here, but Dr. Miller said we could use the drops only, not the paste or gel, just a couple times a day, especially before speech therapy. Mi Paste is less for salivary issues and more for teeth protection, so it wouldn't work for our needs.
One of the most interesting pieces of news was that right now Olivia is still getting hungry AND satiated. I told her that I felt that Olivia showed definite signs of not wanting to eat more after eating a decent amount and I was worried that we would teach her body to override what little signal it did have and ignore her feelings of hunger/fullness. Dr. Miller agreed. She feels we should no longer try to feed her by the numbers as much as we have been, but instead follow her hunger cues. It was very exciting for me! This doesn't mean she won't suffer from the hyperphagia, but just that she doesn't suffer from it right now. There is still time for a miracle cure! Yes, I know it's a long shot, but I'm finally hoping for one.
We'll be back in 6 months. At the 2 year mark, Dr. Miller will also have a speech therapist there to check for apraxia. If it is there, then the ST will work with us/our ST to correct that.
All in all, it was a great visit. A lot of questions answered and some positive affirmations on how well Olivia is doing. It is hard not to compare your child with others who have the same syndrome and wonder how far behind she is. Considering her extremely rough start, she is much farther along than anyone anticipated. I am so grateful for our Tricare insurance, my family, friends and support systems. Without all that, she would not have achieved as much as she has.
Wednesday, December 8, 2010
Olivia's New Teeth
In November we had a developmental checkup for Olivia at the High Risk Clinic at MUSC in Charleston. Dr. Papu was one of the doctors overseeing her care when she was in the NICU, so it was nice to show Dr. Papu how far Livia has come since last year.
At that time we also had an evaluation by a pediatric dentist. Livie has 8 teeth, and 3 out of the four top ones were not completely formed. I learned that teeth are one of the last things formed in the womb and they grow in rings, like trees. When a traumatic event occurs, like a premature birth, the body puts effort into healing rather than growing. Along with the antibiotics given to her during her NICU stay, her teeth did not form properly. They looked like slivers of teeth and she was diagnosed with dental hypoplasia. You could see some of the interior of the tooth and the dentist was worried about dental caries. I was very impressed with the knowledge of the dentist at the time, and she took detailed pictures of Olivia's mouth before setting us up with a follow up appointment for today.
Traveling with Livie to a doctor's appointment is always tricky. Her primary source of nutrition is still Neosure from a bottle. She can't drink from a cup and she won't drink anything that isn't exactly the right temperature. If it is a neutral weight and temperature, it almost seems as if she can't feel it in her mouth or recognize that she needs to be eating. It takes about 45 minutes to an hour to feed her most times. Doctor's appointments away from Beaufort, even just one of them, usually takes all day to complete. It's a two hour drive, so we have to leave early enough to feed her there before the appointments so we can do the requisite waiting around in busy offices, and then feed her afterwards before the drive home. And the doctors there are excellent - they take their time with you and your child so you are often there for some time.
Olivia will always have some mouth/teeth issues. One of the presentations of PWS for her is reduced saliva. Her teeth and mouth need to be brushed often, her breath is often stinky, her saliva is thick. Her dentist mentioned that we would need to work harder on preventing cavities with her and that regardless of her future diet, she should eat (when possible) her carbohydrates first, followed by proteins and fat. Apparently this helps neutralize the sugar from the carbs and reduces the likelihood of cavities by creating a more acidic environment. So interesting! I asked her about some toothpaste I had recently picked up in KC (Tom's of Maine) because I wanted less sugar in the girls' toothpaste. She agreed that it was a good one for Olivia, and will give me some feedback on other items I purchased after I send her the labels from them. I picked up a natural mouth spray with xylitol in it - she was thumbs up on the xylitol but wanted to know more about the spray.
The dentist had recently gone to a conference on Pediatric Dentistry after meeting Olivia in November. It was encouraging to me to hear that she specifically sought out more information on the issues facing Livie. When she mentioned that she looked for PWS dental pictures on the internet but couldn't find them, I told her that she was welcome to use the pictures she kept taking of Livie's mouth in any way that would help other dentists. Next visit, I will sign consent forms for her to use Olivia's data for research or other purposes. During the conference, she asked about Biotene for babies and children (to help with salivary issues). Dr. Miller recommended it for use with Olivia, but there are no protocols for children under 12. When I called the company, they refused to even discuss possibilities with me due to FDA regulations (understandable, of course). Our dentist sought out many experts at the conference asking about this and was told there was nothing out there but it was an interesting concept. So I told her if she could figure out something that worked for Olivia, she could get rich and famous!
The conversations with the dentist were extremely informative and interesting; she really knows her stuff. They ended up giving Olivia two different treatments that resulted in her having normal looking teeth, and covering up the weak areas so the teeth don't further deteriorate. We'll go back in 3 more months for a follow up.
At that time we also had an evaluation by a pediatric dentist. Livie has 8 teeth, and 3 out of the four top ones were not completely formed. I learned that teeth are one of the last things formed in the womb and they grow in rings, like trees. When a traumatic event occurs, like a premature birth, the body puts effort into healing rather than growing. Along with the antibiotics given to her during her NICU stay, her teeth did not form properly. They looked like slivers of teeth and she was diagnosed with dental hypoplasia. You could see some of the interior of the tooth and the dentist was worried about dental caries. I was very impressed with the knowledge of the dentist at the time, and she took detailed pictures of Olivia's mouth before setting us up with a follow up appointment for today.
Traveling with Livie to a doctor's appointment is always tricky. Her primary source of nutrition is still Neosure from a bottle. She can't drink from a cup and she won't drink anything that isn't exactly the right temperature. If it is a neutral weight and temperature, it almost seems as if she can't feel it in her mouth or recognize that she needs to be eating. It takes about 45 minutes to an hour to feed her most times. Doctor's appointments away from Beaufort, even just one of them, usually takes all day to complete. It's a two hour drive, so we have to leave early enough to feed her there before the appointments so we can do the requisite waiting around in busy offices, and then feed her afterwards before the drive home. And the doctors there are excellent - they take their time with you and your child so you are often there for some time.
Olivia will always have some mouth/teeth issues. One of the presentations of PWS for her is reduced saliva. Her teeth and mouth need to be brushed often, her breath is often stinky, her saliva is thick. Her dentist mentioned that we would need to work harder on preventing cavities with her and that regardless of her future diet, she should eat (when possible) her carbohydrates first, followed by proteins and fat. Apparently this helps neutralize the sugar from the carbs and reduces the likelihood of cavities by creating a more acidic environment. So interesting! I asked her about some toothpaste I had recently picked up in KC (Tom's of Maine) because I wanted less sugar in the girls' toothpaste. She agreed that it was a good one for Olivia, and will give me some feedback on other items I purchased after I send her the labels from them. I picked up a natural mouth spray with xylitol in it - she was thumbs up on the xylitol but wanted to know more about the spray.
The dentist had recently gone to a conference on Pediatric Dentistry after meeting Olivia in November. It was encouraging to me to hear that she specifically sought out more information on the issues facing Livie. When she mentioned that she looked for PWS dental pictures on the internet but couldn't find them, I told her that she was welcome to use the pictures she kept taking of Livie's mouth in any way that would help other dentists. Next visit, I will sign consent forms for her to use Olivia's data for research or other purposes. During the conference, she asked about Biotene for babies and children (to help with salivary issues). Dr. Miller recommended it for use with Olivia, but there are no protocols for children under 12. When I called the company, they refused to even discuss possibilities with me due to FDA regulations (understandable, of course). Our dentist sought out many experts at the conference asking about this and was told there was nothing out there but it was an interesting concept. So I told her if she could figure out something that worked for Olivia, she could get rich and famous!
The conversations with the dentist were extremely informative and interesting; she really knows her stuff. They ended up giving Olivia two different treatments that resulted in her having normal looking teeth, and covering up the weak areas so the teeth don't further deteriorate. We'll go back in 3 more months for a follow up.
Thursday, November 18, 2010
Watching my future run and jump
Earlier this week, I had the pleasure of meeting with another mom who has a child with Prader Willi Syndrome. This woman has been a lifeline to me in more ways than one since Olivia was born. When Livie was diagnosed and I had our first visit with the geneticist, at the end of the visit he asked me if I had any more questions. I only had one - did he know of anyone else in South Carolina who had been diagnosed with PWS? And could I talk to that family?
Lucky for me, he did. AJ was diagnosed at 8 months and is now 3. Her mom called me not too long after that conversation with Dr. Pai. I had so many questions for her. I was still in a daze, and many times over the past year I have asked her the same questions over and over again. She has never ceased reaching out to me, even when I absented myself from the world for a little while. I am so very grateful for that. She gave me some hope when I didn't have any, and she gave me some valuable resources that we would have never known about otherwise for quite a long time. Without her, we would probably not have found Dr. Miller for quite a while, and as a result Olivia has better care than she would have otherwise.
She saved me hours of research by passing along shortcut information... and she did it cheerfully and without ever making me feel obligated or intruded upon. It's a fine line to walk when someone needs help and she did it with grace, compassion, and an open heart.
As blessed as I am by all that, I am even more blessed to meet her precious daughter. Ayden Jane is so stinkin' cute, spunky, and funny. We told her she was a hoot, and she grinned up at us - "NOT hoot!" She totally got it. She knows she's funny. More than anything else, that gave me hope. For a child to be funny, they have to have an understanding of nuance and subtlety. It's a great sign of intelligence.
AJ is on the higher end of the PWS spectrum, and she's very much like any other 3 year old in many ways. She has a very strong sense of self, likes and dislikes, and was very polite. She did have some delays, but they seemed minimal and mostly speech related. Not at all what I envisioned for our life a year ago. The very best part of my day was Ayden Jane taking my hand twice - once as she walked down the stairs, and once while walking along outside. This really touched my heart. When Amelia was born, we snuggled constantly and she was rarely out of my arms. When Olivia was born, that was impossible. Even after we brought her home, to feed her required this odd position on my knees where she wasn't even held close to my body. One of my deepest sorrows was missing all that physical contact when she was a baby and wondering if we would snuggle and wrestle and play around with each other as she grew up. For some reason, the simple act of AJ taking my hand told me it was going to be all right.
While she played - running and jumping - so did my heart.
Lucky for me, he did. AJ was diagnosed at 8 months and is now 3. Her mom called me not too long after that conversation with Dr. Pai. I had so many questions for her. I was still in a daze, and many times over the past year I have asked her the same questions over and over again. She has never ceased reaching out to me, even when I absented myself from the world for a little while. I am so very grateful for that. She gave me some hope when I didn't have any, and she gave me some valuable resources that we would have never known about otherwise for quite a long time. Without her, we would probably not have found Dr. Miller for quite a while, and as a result Olivia has better care than she would have otherwise.
She saved me hours of research by passing along shortcut information... and she did it cheerfully and without ever making me feel obligated or intruded upon. It's a fine line to walk when someone needs help and she did it with grace, compassion, and an open heart.
As blessed as I am by all that, I am even more blessed to meet her precious daughter. Ayden Jane is so stinkin' cute, spunky, and funny. We told her she was a hoot, and she grinned up at us - "NOT hoot!" She totally got it. She knows she's funny. More than anything else, that gave me hope. For a child to be funny, they have to have an understanding of nuance and subtlety. It's a great sign of intelligence.
AJ is on the higher end of the PWS spectrum, and she's very much like any other 3 year old in many ways. She has a very strong sense of self, likes and dislikes, and was very polite. She did have some delays, but they seemed minimal and mostly speech related. Not at all what I envisioned for our life a year ago. The very best part of my day was Ayden Jane taking my hand twice - once as she walked down the stairs, and once while walking along outside. This really touched my heart. When Amelia was born, we snuggled constantly and she was rarely out of my arms. When Olivia was born, that was impossible. Even after we brought her home, to feed her required this odd position on my knees where she wasn't even held close to my body. One of my deepest sorrows was missing all that physical contact when she was a baby and wondering if we would snuggle and wrestle and play around with each other as she grew up. For some reason, the simple act of AJ taking my hand told me it was going to be all right.
While she played - running and jumping - so did my heart.
Wednesday, October 27, 2010
One final irony...
I'm a Chef.
I don't work as one anymore; I stopped soon after Amelia was born. I generally worked in high end restaurants or clubs, or funky little places with fresh, fun food and live music. I've even worked for a large church around the time Amelia was born cooking meals for their daycare (over 100 kids) and their Wednesday/Friday night meals.
Since she's been born, I've hosted cooking with kids playdates, cooking classes with friends and fun meals in general. Best of all, I cook with my daughter (who turned 4 in June) almost every day in some way. I love being in the kitchen with her; she loves smelling, touching and tasting food. Grocery trips with her are a delight. Cooking as a family and home cooked meals every night sitting aroung the table is a given. Extended members of our family are all excellent, creative cooks and my favorite holiday is Thanksgiving - family, food and conversation.
The kitchen is the heart of our home in so many ways. I want to find a way for it to still work that way in the future without putting Olivia in a position to fail. To remove food from this house and from our lives into a background position is almost unthinkable to me.
I don't work as one anymore; I stopped soon after Amelia was born. I generally worked in high end restaurants or clubs, or funky little places with fresh, fun food and live music. I've even worked for a large church around the time Amelia was born cooking meals for their daycare (over 100 kids) and their Wednesday/Friday night meals.
Since she's been born, I've hosted cooking with kids playdates, cooking classes with friends and fun meals in general. Best of all, I cook with my daughter (who turned 4 in June) almost every day in some way. I love being in the kitchen with her; she loves smelling, touching and tasting food. Grocery trips with her are a delight. Cooking as a family and home cooked meals every night sitting aroung the table is a given. Extended members of our family are all excellent, creative cooks and my favorite holiday is Thanksgiving - family, food and conversation.
The kitchen is the heart of our home in so many ways. I want to find a way for it to still work that way in the future without putting Olivia in a position to fail. To remove food from this house and from our lives into a background position is almost unthinkable to me.
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