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  1. #21
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa)))))) ~

    I'm so glad that your IUD placement wasn't too painful or traumatic, and I will pray that your story is one of the BEST success stories!

    Yes, I remember the winters in the Midwest, with snow up to my hips, and layers of clothing to ward off the biting cold. So, when faced with the decision to move back to California (my mother and my former spouse's mother were both in declining health), I knew it was the best decision long term for my boys. I enjoyed the friendlier, slower paced life style in the Midwest, but the weather was a major factor. Oh, and we endured 4 tornadoes while there! I don't miss those!

    Our trees are about 37 years old in our neighborhood. But when we took our lottery number and traded back and forth, sitting in the model home lobby waiting for 2 days with being at home with the boys, there was only dirt here. We literally watched our home being built from the ground up. And before the trees matured, we had unlimited views of the city lights and fireworks at D-land. But that's fine, because I love our trees, and every evening the sunset casts a magnificent glow upon them. They provide homes for our many bird species, who bathe in Michael's waterfall, and they surround us with a rural, country feeling in the midst of a metropolis.

    In the summer, they look like this:

    Screen Shot 2014-10-04 at 6.01.49 PM.jpg Screen Shot 2014-10-04 at 6.02.44 PM.jpg

    Twenty-eight stairs to reach this peak. I used to do this every morning, now, I do it less frequently. (The older I get, the more I crave flat ground! )

    Screen Shot 2014-10-04 at 6.04.29 PM.jpg

    I just give thanks for the ladies and your dad, who rescued you from the wheelchair down the hill trial!! Mt. Misery in a wheelchair! You might have to do a bit of weight lifting at the gym to conquer that one. Or, they should have disabled parking reserved on the bottom of the hill. If they don't, maybe you could make a suggestion that they do so. The bottom of the hill is where you and Caitlin should always be able to park.

    grande salted caramel hot chocolate

    I just want you to know that I gained 10 pounds in my thighs just reading those 5 words!



    Guess you're not interested in another smoothie now, eh? Well, if you are ... there's one waiting ...



    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  2. #22
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    ((((((funnylegs4)))))) ~

    You have my complete support in your film making efforts! Absolutely!! Just one snafu? Film making is a major undertaking, and snafus are expected. Goes with the territory. I'm sure you'll get the musical score sorted out to your satisfaction. Just keep your focus on the overall production, while you fine tune. Continuity, consistency, flow ...

    Getting away for a few days sounds like a good plan, both personally and professionally for you. I hope you are able to relax and regenerate during your time away. Return refreshed and energized.

    Long ago, a good friend gave me this cogent advice: Don't sweat the petty stuff. Let it ride. Keep the Big Picture at the forefront. Less stress.

    When you return, we'll be waiting for your with a frosty, nutritious smoothie here:



    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  3. #23
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    Wow so much to catch up on. Great to see so much activity though.
    Lisa, I hope your wheelchair gets there soon what a long process! I don't remember Kathleen's taking so long. It's difficult on those tough terrains. We couldn't take Kathleen Apple Picking this year since walking is s difficult and it's a lot of walking. She would need her chair and it's way too difficult to get the chair through the long grass and fallen apples.

    Tamie, Has anyone mentioned an appendicovesicostomy to catheterize? Kathleen can go on her own but she never empties and sometimes can't seem to go. So we catheterize through a stoma in her belly every time she goes or if she can't. Very low rate of infection. It doesn't have to be a sterile cath just clean. It's worked amazing for Kathleen. Keeps her kidneys clear from fluid now. Also it's so easy to d anywhere you are, sitting or laying down. I'm not sure what his medical history is but I just thought I'd mention it.

    Rose beautiful trees. We have some very old large trees in our yard too. Lots of Pine trees too. We will be very busy soon cleaning up after them soon when they start to fall. I think the pine needles are tougher to clean up than the leaves.

    Kathleen sees the orthopedic Dr. Friday. She had a tough day Saturday. Wake up in the middle of the night crying. Then 3 times during the day cried she said her "cheek felt big". It really bothered her. Also complained her legs were tired. Sunday was good. Then Monday she woke up crying that her legs were "tired" didn't make it to school. She went to PT later did pretty good but when she got in the car she cried that her "legs were tired" I'm not exactly sure what the exact feeling is when she says this. She cried for about an hour about this and then fell asleep. Yesterday she woke up and said her head felt warm cried a bit but pulled herself together and made it to school for a couple hours. She got up pretty good today and she's at school now. Not sure for how long. What a mystery this girl is...
    Mary Grace

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  5. #24
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    Thanks for all the info. Took Tyler to his new PCP yesterday. Young guy, but one who knew what Ohtahara Syndrome was (that was amazing). Had a lot of blood work done, but the only abnormality was a higher MCV number. Looks like it indicates a B12 deficiency and maybe folate. Tyler's been on Prilosec for years, so that could be the culprit. We don't eat red meat and rely largely on wild caught fish, occasional organic chicken or turkey and mostly fruit, veggies, whole grains. Most vegetarian, so that can also cause the off number. Will have to wait and see what the doc says.

    Fireman are exposed to every known carcinogen there is during their years of service. Most of my hubby's co-workers are passing from some form of cancer or heart problems. Five years past retirement seems to be the golden number when one of the cancers rears its ugly head and strikes. I guess there are numerous studies out there regarding this issue. I keep pretty close tabs on my husband. Watching, waiting, hoping and praying. He gets down when notified of another friend fighting for their lives. I understand what he is feeling from years of following families with OS and losing so many children every year. I guess we are quite a pair.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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  7. #25
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((funnylegs4)))))) ~

    You have my complete support in your film making efforts! Absolutely!! Just one snafu? Film making is a major undertaking, and snafus are expected. Goes with the territory. I'm sure you'll get the musical score sorted out to your satisfaction. Just keep your focus on the overall production, while you fine tune. Continuity, consistency, flow ...

    Getting away for a few days sounds like a good plan, both personally and professionally for you. I hope you are able to relax and regenerate during your time away. Return refreshed and energized.

    Long ago, a good friend gave me this cogent advice: Don't sweat the petty stuff. Let it ride. Keep the Big Picture at the forefront. Less stress.

    When you return, we'll be waiting for your with a frosty, nutritious smoothie here:



    Love & Light,

    Rose
    Thanks so much Rose! Actually in August we had to reshoot an entire scene so the music issue is not that much of a headache by comparison. :) I have rough versions of the songs so I can at least have the visuals for the songs edited correctly. Then we will fine tune things later. Well…I'm back. Didn't go the way I thought but it wasn't bad either. Wish the people in my life would actually listen to that advice!

    Kathleen sees the orthopedic Dr. Friday. She had a tough day Saturday. Wake up in the middle of the night crying. Then 3 times during the day cried she said her "cheek felt big". It really bothered her. Also complained her legs were tired. Sunday was good. Then Monday she woke up crying that her legs were "tired" didn't make it to school. She went to PT later did pretty good but when she got in the car she cried that her "legs were tired" I'm not exactly sure what the exact feeling is when she says this. She cried for about an hour about this and then fell asleep. Yesterday she woke up and said her head felt warm cried a bit but pulled herself together and made it to school for a couple hours. She got up pretty good today and she's at school now. Not sure for how long. What a mystery this girl is...
    Mary Grace
    Hmm, does her heel feel "heavy" to her? Or does it feel like the muscle is "locked"?? When my spasticity makes my legs tired my body will react in different ways. If I am over using an area that is tight I feel like I'm dragging my feet around. It's very irritating. Getting foot massages weekly helps when I feel this. The other response is that my muscle will feel like it is locked and immovable. My PTs called it a "block". Apparently this response can be from a slight injury like a sprain etc and it can really really hurt because the spasticity sees the injury as a major threat and will over react. I heard this very recently after experiencing pain in my leg from working out. I went to far at first, and now found a better compromise that is healthy for me. The best thing is rest if the muscle is "locked".

    Thanks for all the info. Took Tyler to his new PCP yesterday. Young guy, but one who knew what Ohtahara Syndrome was (that was amazing). Had a lot of blood work done, but the only abnormality was a higher MCV number. Looks like it indicates a B12 deficiency and maybe folate. Tyler's been on Prilosec for years, so that could be the culprit. We don't eat red meat and rely largely on wild caught fish, occasional organic chicken or turkey and mostly fruit, veggies, whole grains. Most vegetarian, so that can also cause the off number. Will have to wait and see what the doc says.
    I have a diet like yours. I take B12 and vitamin D supplements to balance things out.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  9. #26
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Mary Grace)))))) ~

    I am so sorry to hear that Kathleen is in so much discomfort and so tearful. Adolescence is difficult enough without pain added to it. I hope the orthopedic doctor had some brilliant suggestions today.

    Please keep us posted!

    ((((((Tamie)))))) ~

    Younger doctors are often more up to date on current treatments/therapies, and maybe a bit more enthusiastic about their practice than older, worn out docs. I wonder whether the B12 and folate deficiency could have any correlation to Tyler's seizures? Did Dr. Kringle offer an opinion about Tyler's repeated UTIs? Did you discuss CBD?

    Do you supplement Tyler's blenderized diet with a multi vitamin? Maybe that's all he needs, or just an increase in folate and B12.

    It certainly seems logical that firefighters have a greater risk of cancer, as well as heart problems. I'm sure that you and your husband are concerned, particularly when his colleagues are passing. I have great respect for firefighters. Please thank your husband for me for putting his life at risk to save others. He is a Hero. I will pray for his health and well being.

    And, yes, you are quite a pair. Quite a remarkable, amazing, strong, loving, and determined pair. Bless you!

    ((((((funnylegs4)))))) ~

    I'm sorry that your getaway didn't go as planned.

    The world would be a much better place if everyone took the advice to not sweat the petty stuff. Mountain-making from molehills often happens with people, who don't actually have BIG problems. I do my best to be compassionate toward everyone, realizing that most people do not realize how fortunate they are. There are times, when I hear whining over something utterly meaningless in the Big Picture, when I'm tempted to say, "Well, if that's the biggest problem in your life, then give thanks, and God Bless You!" But I resist.

    Keep us posted on your film's progress!

    ((((((HUGS)))))) and to All ~

    Choose Your Fruits! Smoothies now being served:



    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  10. #27
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    THANK YOU ALL SO MUCH FOR CHECKING IN AT CN CENTRAL!!


    ((((((HUGS TO ALL)))))) ~

    I have been composing my replies off and on for a couple of days; then copying and pasting them here. Took a break to get some cleaning and laundry done! Now, finally this update on Jon and our PT adventure ~

    Tuesday, PT arrived promptly at noon, and Jon was so pleased to see him. Jon was constantly reaching out for PT's hand, to give him a hug, smiling at him, vocalizing. Jon knows that PT is the reason he is feeling better, the reason why he isn't drowning in fluids any longer, the reason his SATS and heart rate are NORMAL after YEARS of abnormality. Jon is grateful, as we are. Plus, PT is just a sweet, cool guy.

    PT lifted the sheet covering Jon's legs, and PT exclaimed, "Wow! Oh Wow!" He examined Jon from toe to torso, admired the pliability of Jonís skin and the moisture in it. The definition in Jonís toes now. He kept remarking on the incredible difference from this past month's therapy administered by Jim and me. He praised us for our efforts, while we gave him thanks for teaching us what to do for Jon.

    When PT declared, "Jon does not have lymphedema now!" I nearly burst into tears.

    How easy this was! And, if we'd had the benefit of PT's wisdom and knowledge years ago, Jon would have been spared so much agony and misery! Five hours of suctioning late at night to keep him from drowning! Time after time after time ... And here, with the proper guidance and commitment of a PT, we have conquered lymphedema.

    Now, we move on to the next phase. PT demonstrated stretching of the leg and the heel to us. We will be doing this 3 times a day. I insisted that I do it, with PT present to correct me, and I'm glad that I did. It's not as easy for me as it is for PT! I still feel uncertain and worried about pulling Jonís hamstring. I welcome any and all pointers/tips/advice from those of you with experience in this area! Please!!

    We have new pillow positions now too, as we're working on the windswept legs. Jim and I were unable to replicate PT's positioning, when we lifted Jon up in bed and redid the pillows. I took photos of the PTís positioning of Jon for us to study, but we just couldn't achieve the same position for Jon with the larger pillow PT used. We noted, when turning Jon, that his bottom was a bit red, so we may have to work up to the full position gradually. We went with a smaller pillow. Jon seems content with that one now.

    PT told us to trust our instincts and our knowledge of Jon as we progress toward Jon being able to tolerate sitting in his wheelchair. This can't be rushed, and we have to be careful with Jon's stretching exercises not to cause a spasm. This is more involved than the massaging, so I just pray that we do it properly to help Jon.

    PT will return in a month, but he will be available via email for weekly updates.

    Urine output is still a mystery. His total output has been outstanding, but he still holds for hours and dumps a huge amount at once.

    Of concern: his heart rate, elevated in the 90s yesterday, but no fever or any indication of pain.

    In fact, friends of ours recently saw Elton in concert and made a 12 minute DVD of snippets of his performance for Jon. The night they attended the concert, Jon and I watched Elton DVDs and pretended to be there with them. They texted photos of themselves during the concert, and I texted photos of Jon. Yesterday, Jon was so excited to have their little mini concert footage, he watched it 3 times! And he was dancing and rocking and rolling. He wouldnít do that if he was in pain.

    So, I donít know what is up with the heart rate. But there always has to be something to fret about, right?

    Heart rate today is in the lower 80s, SATS 97. Excellent. Good voiding. BM-ing. And I cut his hair today, and he sat up so well and cooperated. He is definitely feeling better and stronger. And he looks so spiffy now ~ ready for his sweetheart to arrive.

    On Monday, Nurse Goddess will visit to do Jonís re-cert, trache change and wound check (coccyx). We had finally worked the bi-monthly re-cert to coincide with catheter changes, but then Jon stopped peeing continuously, and he ended up with an ďemergencyĒ catheter change 12 days early. So every 2 months, Jon will need two nursing visits to accommodate the law of re-certification. It keeps the agency honest. But itís a lot of ďpaperĒ work for the nurses, which they do in the evenings at home. Itís actually fortuitous, because the only time we see Nurse Goddess is when Jonís primary nurse is on vacation. And Jon just loves Nurse Goddess, so weíre all very happy to have her visit.


    Now, follow me down this path lined with palms, hibiscus, orchids, and other lush tropical vegetation, where your favorite fruits (and veggies too) have been blended into a cool, refreshing, healthy tropical treat. The weather is stupendous, and the chaises are comfortable. The sand is warm beneath your tootsies, and the waves are peacefully lapping upon the shore. We are all there together relaxing. Chatting. Laughing. Closing our eyes and just being. Take 5 (or 10) minutes to just imagine that, my friends. It is wonderful therapy. And you deserve it!


    Prayers for all of you, your precious children, and families ~ and abundant blessings upon you ~



    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  11. #28
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    It is amazing how much good is coming out of Jon's PT. So nice to hear he is getting stronger and feeling better and wonderful to know that there are still angels out there looking out for our boys.

    Have no idea what to do about Tyler. He is gagging and retching daily, seizures are miserable and our hands are so tied. With all the test results coming back in the normal range the doctor has no clue. I am wondering if it has something to do with that elusive underlying cause to his OS that is poking up its ugly head. We wait and we watch and we pray. Still going to L.A. on Monday to check out the Keto Diet in the hopes it will help. It's going to be a very long day. The doctor says the high MCV is likely due to multiple causes: being on Prilosec for nearly 10 years, on anticonvulsants for nearly 20 years, our vegetarianism (though we supplement with a daily multiple vitamin) and the list goes on. He isn't concerned. He is letting the specialists handle the UTI's and stomach problems. We mentioned CBD and there is nothing he can do. Kaiser will not allow their doctors to prescribe or recommend MMJ because it is against Federal Law. However, he said if Tyler were his son, he would try it.

    Tyler's mom ended up in the ER two nights ago. Took some prescribed pain medication for her bulging disk and had a very bad reaction to the drug. Heart rate dropped into the low 40's and stayed there. Extremely nauseous and light headed. She was afraid to go to sleep. Now she needs a cardiac workup to see what is going on. Sure hate them living so far away. Nothing we can do to help her. Good thing prayers go the distance.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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  13. #29
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    Hi!

    Glad to hear such a great report with Jon's therapy! Hope there continues to be improvements!! With Caitlin, she has been wearing knee immobilizers at night since she was age 3, so 10 years now! Her PT says that is likely what has kept her hamstrings so good for this long. When we went to the CP clinic, the doctor said how good range of motion she had. She has only had to have botox 3 times ever in the hams, just those few growth spurt times. Would Jon tolerate wearing those for a bit to keep his legs stretched? I always remember how Brian's Mom thought it was so mean to put those on Caitlin and one time a few years ago when Caitlin stayed overnight there, she didn't put them on...and spent the whole next day stretching Caitlin's legs out since she was in massive pain! We don't get any grief now! And it was interesting to me in a way to know that it is necessary yet for her to wear them. It is just habit for us to put them on her, just part of the bedtime routine. She has always slept on her back so it works out for us.

    Sorry to hear that Tyler is not doing so well and that his mom is having trouble too....sending prayers for improvement!

    I made my own appointment for cardiology, will be seen early November to get checked for the thing my Dad has (bicuspid valve). When I saw the OB, I told her all that history and when she listened to me, she said she did hear a murmur so we will see. That is how my Dad started on this heart stuff (doctor heard a murmur) so hoping it is nothing!! When I was looking up the doctor bio's online, I saw their physician assistant is a lady I go to church with. That will be nice to be able to ask her if the doctor is good, there were 2 to choose from at the location I chose, but I just took the first available appointment. They both sounded good from their bio's.

    Monday will be 2 weeks since I last called on the wheelchair so that will be on my agenda. I figure calling every 2 weeks will not make me too much of a pest. Caitlin looks awful in her chair. Her back is getting worse and it is so obvious. I worry that her neck will get torticollis from leaning to one side for so long.

    Brian has finally had his license suspended so that is a bummer. For both of us really since I now have additional driving around to do. I keep looking online to see if he can apply for an occupational license but it doesn't show anything yet on the dmv website. He will have to call them on Monday to see what he needs to do. Did I say he had court this week? I was super stressed about it, but it turned out to only be the intake...where you say 'not guilty' or whatever and they give you another date for more court stuff. That will be the end of November. Which happened to be the day I was supposed to bring Tyler & Logan to get checked for their heart stuff! So, I rescheduled that, which in the end turned out ok. I ended up getting an appointment with the same doctor that saw Caitlin & Brandon. I figured that may be better since there were actually bad things found. It means I will have to drive to Milwaukee instead of going local but well, I guess that is my job!

    Life is not all bad though, we went to my niece's 2nd birthday party tonight...had a great time! She is such a cutie pie....actually liked the clothes better than the toys she got! LOL!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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  15. #30
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    Hi Everyone! Gosh, there is so much good and bad news here with all of you, my friends. Rose, I am so happy that Jon is so much better with the PT and his fluids management. It is a miracle! Tamie, I'm so sorry that Tyler is having such a tough time. I remember when Nick was so ill, he was put on para-enteral feeding and all the tests came back normal, but he was SO SICK. That is the worst. When there is no diagnosis, there is no treatment plan unnamed.jpg it's hard to have hope. I will pray that this mystery gets solved very soon. Mary Grace, how is Kathleen now? I hope she is feeling better and that the doctor has some answers for her leg pain and discomfort. Lisa, I hope that life just gets easier for you in the coming days and weeks. Not sure how that's going to happen with Brian's court case ongoing and you doing the driving. But I will pray that things ease off and it will be a good thing in the long run, for sure, with Brian having this wake up call and not putting himself and the boys at risk anymore. I pray for each of you and your precious children every day.
    As for us, we are well - Nick is on a roll with rock solid health. This weekend is Thanksgiving weekend in Canada and we have plenty to be thankful for. unnamed.jpg I attached a photo we took this afternoon - Natalie came home from school in Delaware for the weekend and we all went over to Nick's today and had a picnic. We had a really lovely time and for sure, I feel grateful for many blessings, especially the health of Nick and Natalie. Sending love to you all - I think of you every day. xoxox Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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