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Thread: annual paragraph of woe

  1. #1
    Distinguished Community Member andromeda31's Avatar
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    Default annual paragraph of woe

    Hi!

    School is over, but ESY started today for Caitlin! New schedule, probably more driving around for me with all the kids' activities. Right now I am working on my annual paragraph of woe for the MA forms. I have Caitlin's Katie Beckett home visit tomorrow and have to have them done for that. Nothing like waiting until the last minute. It is always depressing to sum up my year, every year, for this form. Amazing to see how far she has come since a few years ago though. I actually had to leave the hospitalization part blank since she has not stayed overnight in the hospital since April 2013! That is amazing and I am so enjoying not having to be there. We had a visit to the CP clinic a few wks ago. Her spine is worse now but I am working with new vendor RR, he is meeting us on Thursday to evaluate for a new wheelchair. He was supposed to meet last Tuesday but never showed, not sure what was up with that. Still no bath chair from bad vendor either, no surprise there. Anyway, here is my paragraph of woe:

    Caitlin continues to struggle occasionally with her epilepsy. It is considered to be drug resistant. She continues to take depakote and felbatol to control her seizures. At times, she has breakthrough seizures, but they have been seldom enough that we are keeping her medicines where they are at currently. We had increased the felbatol in the fall of 2013, but she reacted with vomiting to the increase so we went back a bit on the dose and she stabilized. Her neurologist offered the modified keto diet to us as a possibility to try with Caitlin, but we are holding off for now unless her seizures should worsen. When the meds are not working, her skills regress significantly, but she has had a pretty good school year once we got her meds sorted out in the fall. Her transition to middle school went smoothly. Caitlin had a few viral illnesses this past year, but nothing that required any hospitalizations. Caitlin just visited the CP Clinic in May and the curve in her spine has worsened significantly. They are recommending spinal fusion surgery at this time. The curve noticeably worsened after she received her new molded wheelchair seat in January. It is now an S curve; 21 degrees at the top and 49 degrees at the bottom. I am currently working with a new vendor to check into acquiring an entirely new wheelchair as she has had significant growth over the past 6 months. The current wheelchair causes Caitlin pain after only 15 minutes sitting in it.

    Hopefully all the talk about the worse curve will help get a new chair approved quickly? Not sure if all those offices are in the same building or what down in Madison or if all this stuff ends up in the same computer system. Worth a shot though! Well, time to finish the forms so I can get to sleep.

    Lisa O.

    PS: life is not all bad though, we had a fire in the pit over Memorial Day weekend (this is our side yard)...Brian making a s'more for Caitlin! Relaxing!!
    20140525_9.jpg
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  2. #2
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    Hi Lisa, Ugh, I hear your pain about filling in those awful forms!!! I also know what pain in sitting is like for our kids. It's awful. It's so difficult - the bane of our existence, really. We've never really cracked that nut, but we've done our best, I think. Nick's baclofen pump runs a mixture of baclofen and bupivicaine (a spinal anaesthetic) which really helps. His S curve is terrible, but we're not doing anymore big surgery. I hope you get your sweet girls new chair soon - her head hanging over the side is so worrying and it can't make the pain any better. It's so frustrating waiting for approvals and fittings - it's the same here in canada. I'm glad you had a bonfire in the backyard - sounded like so much fun! Sending love to you and your gorgeous family, Lisa xoxo 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


  3. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa)))))) ~

    First, I rejoice that Caitlin hasn't been in the hospital since April 2013! YAY!

    But her wheelchair situation is quite concerning, and I pray you can get it resolved very soon. Would the chiropractor be of any help now?

    What is with these vendors? Is there any agency to which you can complain about their lack of professionalism, responsiveness, and fulfillment of your daughter's needs? If so, I would call them and give them an ear full.

    Caitlin is probably going through a growth spurt, so the "experts" need to be on the ball, and be responsive to her changes.

    And your "annual paragraph of woe" ~ oh Lisa ~ I'm sorry that you have to go through this every year to receive the funding you need for Caitlin. It is so insulting. As parents, we want to praise our child's accomplishments, but these requirements force us to focus on the negatives.

    Your paragraph is perfect, and I do hope it gets someone attention that Caitlin needs help now not later.

    Please keep us updated!

    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.

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    Lisa, I'm so sorry you have to go through writing the paragraph every year. As Rose said though hopefully it will get the help you need quickly. As parents we strive to stay positive and to have to put thee negative in writing is just a bummer. I hope you can get her wheelchair straightened out quickly...
    Fantastic news about no hospital stays this year!
    Great picture! I love having a fire in the backyard. Your fire pit is beautiful.
    Mary Grace

  5. #5
    Distinguished Community Member andromeda31's Avatar
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    Thanks everyone! :)

    I have some good news...the bath chair is FINALLY in! They scheduled an appt for next week to deliver it but I did not want to wait so I drove out there and asked if I could just pick it up on the spot. Of course they couldn't say no with me standing right there. Signed the paperwork and shoved it in my van and off I went! Got to school just in time to pick Caitlin up. It barely fit in the van, but I was able to close the doors so it was ok. I gave Caitlin a shower on it last night and it was awesome! I didn't have to hunch over at all and it was so much easier to lift her in/out. She liked it too, the netting is more fabric and less plastic-y like the old chair. We are going to bring the old chair to Grandma O's house since they have a pool and we will be able to set Caitlin on the old chair on the pool deck when she is sick of swimming. Otherwise we didn't really have a good place for her to sit besides her wheelchair. I think it will work great for this, better than just throwing it out. :)
    20140619_30.jpg

    The home visit went good...mostly the lady talked...and talked and talked. I know all about her family now, lol! I asked a few questions at the end but nothing really major. One nice thing I learned is that they scan all the forms into a electronic file now that all agencies can access so the things I write can be seen like by MA also I guess so hopefully they can see how her year is going and take that into consideration once the wheelchair request comes through.

    Met with the new w/c vendor last week (can't remember if I shared that here or not), it was great! He thinks he can get a new chair down to 35 lbs! That is half the weight of what she has now and that would be awesome for me and for her! I think she would push her chair even more if it were lighter. Still waiting to hear from him this week, he is supposed to be bringing a gait trainer to test for Caitlin. I am considering just sawing the foam on the seat bottom level and buying a walmart cushion that is just straight/level/flat and setting that on top of the foam base so it would just be a straight across seat. I did talk with the chiro about the seating to see what their opinion was...they agreed that a molded seat is bad and said they do not like to 'correct' (like putting lifts on one side or the other) as it doesn't seem to help really. Caitlin's pelvis is actually tilted so this molded seat she has kind of lifts one butt cheek up and like the chiro said, it has not helped to have that done, the body compensates for it and it throws something else off, which is why I think she developed the curve on top. Their biggest suggestion was lots of tummy time out of the chair. We have been following that advice, only having her in the chair to eat and when we go places, at home, she is on the floor. It works good, she pushes up on her arms to do her kindle which is really good for her upper body strength. And she can army crawl like you would not believe! Her aides at school were impressed at how she can go on the floor!

    Summer school is going well, lots of driving for me though. I bring them and only have a few hrs until I have to get back and pick them up. I have not been getting anything done here at home with this schedule! Right now I am just taking a little break to post here and then I get to balance my checkbook for May and get June written in also (I am really fussy, should have been an accountant! LOL!).

    Hope you all are doing well and having good weather! Rainy here, but I am glad it has been cooler since we are waiting to get our a/c charged up so we can run that when we need to. I love being able to open the windows up with the low 70's we have been having!

    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!!

  6. #6
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa)))))) ~

    Great News! I'm so happy for you and Caitlin that you have the new bath chair! How long have you waited for this chair? I've lost track. What a blessed relief for you two! And great idea to re-purpose the old bath chair. You're pretty doggone clever!

    A chair weighing 35 lbs would be fantastic! Is that with removable parts, or is it the total weight with all parts attached? I have to agree that the molded seat isn't the greatest idea, because it is static and doesn't allow for normal movement. I'm glad you have a good chiropractor.

    Caitlin's tummy time will strengthen her upper body, which will help her to be able to push her own chair. It's amazing to me how much upper body strength Jon has. No strength at all in his legs, but he could probably wrestle anybody using just his arm strength. He used to "butt scoot" using his arms to propel him, and like Caitlin with her army crawl, he was incredibly quick. He also used his arms to help him scoot up the stairs (backward, with me sitting right next to him) when I couldn't carry him. So, that's really great exercise for Caitlin, and it's wonderful if she doesn't mind being in that position.

    You're probably really glad that home visit is over, and how nice of you to listen to the worker's life story! I get that often too. I guess we give off the vibe that we're compassionate and understanding, and folks pick up on that vibe and go to town with it!

    I hope you have some fun family time planned for the summer. How's the new bed working out? Is Brian better with his C-Pap?

    Thank you for updating here, and please keep us updated!

    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.

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    So glad to hear some good news. Sounds like some things are really falling into place... although not without a lot of work on your part! What a great idea for the old seat! I hope your summer goes smooth and you get to have some fun and enjoy some good weather.
    Our weather is finally getting warmer but the nights are still so cool that our pool is really cold still. I agree it's so kind of you to be such a good listener when you have so much on your plate. I agree your compassion must come through loud and clear.
    Mary Grace

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    Distinguished Community Member andromeda31's Avatar
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    Hello!

    Rose, I think it is total weight. I am a little disappointed that I haven't heard from the new vendor since our meeting. I am thinking he may be on vacation...I called last week and left a voice mail but haven't heard back. I plan to renew my pestering this week since the holiday will be over. The new bed is working great, so glad I did that! Brian ended up going back and getting a full face mask. With nasal congestion, that type works better for him. He has his follow up appointment soon so it will be interesting to see what they find on the sd card. The machine records everything and they check it.

    Mary Grace, it has been pretty cool here too. Brian's parents have a pool...the boys have gone in a few times, but it is too cold for Caitlin & I yet. Hoping it warms up a little since that is good exercise for her!

    Caitlin has been having more frequent breakthrough seizures lately. I have been speaking with neurology about it and we did labs last Saturday. Her levels were 'normal' but when I asked further, the nurse said the felbatol was a little high (82). I think she said top of range was 60 something. Her doctor is on vacation so I won't hear anything until Monday which I am fine with, we have been busy too. :) Good things at least! (mostly) We did have a trip to the ER 2 weeks ago with Brandon's foot, he had a plantar wart on the bottom that we were working on (with the wart acid stuff). Well, he walked into the slimy pond next to our house without shoes and lo and behold...infected foot! They had to cut out a dime size chunk of foot and he was on antibiotics to help. It was a pain! We also had to soak his foot 3x/day for 5 days. I hope he has learned a lesson!

    Well, that was our bad...our good: we had a cookout for Tyler's bday and then we went to my parents' yesterday for the 4th. Fun with family! We also have a new addition to our family as of today....a new puppy! We renamed him Ranger. They have to send in a name within 3 days of birth so he was Izaak vom Cranberry Creek. He is a Deutsch Drahthaar (hunting dog). He is so cute!! I was ready to get a pet and Brian really wanted a hunting dog so here we go!

    Another thing is I have been so tired of hearing Caitlin say her back hurts when sitting in her w/c...I ordered a 3" memory foam cushion and when it arrived on Wednesday, I took apart her chair, too the seat base out to the garage and attacked it with a saw! What a pain to saw through....but I made it level and then came back inside and put that back on the w/c frame and put the cushion on top of that and recovered that all with the black cover. It looks great, you can't even tell I hacked it up. And it is perfectly level now, she looks so much better in it and best of all, does not complain of pain. I hope this will be a 'good enough' solution until we get a different w/c. I also hope that having a level seat will keep her spine from progressing further. Fingers crossed! Caitlin has 2 more weeks of ESY summer school. It feels like summer is half over now that the 4th is done. Hoping we can do a getaway still, even if only for a day. :)

    Lisa O.

    20140704_33.jpg20140705_39.jpg
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  9. #9
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    Caitlin looks like such a big girl now! The floor time is wonderful and may help with core strength too. I have CP and a well developed upper body. I moved using my arms exclusively until I was 3. At 10 I pulled myself up on a tree bench with just my arms. I'm glad the wheelchair doesn't give her pain anymore.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    ((((((Lisa)))))) ~

    I'm so sorry to hear that Caitlin is having more breakthrough seizures. What is Caitlin's usual or "normal" level? Do you have records of previous blood tests to compare with her current one? To the nurse, 80 may sound like a slight increase, but if Caitlin's normal/typical level is 40 (which would be considered low by the range you were given), then 80 is more than a slight increase.

    For example the normal range for Dilantin is 10 to 20. If Jon reaches 15, we notice the effects, and if he goes to 20, he's toxic. His normal range, with seizure control as a factor, of course, is 12-13. His normal range for Depakote is 32-35, which is significantly lower than 50, where the range starts for that drug.

    Many AEDs can cause seizures at a toxic level, as you know. I have no idea whether this applies to Felbatol, but it might be worth considering as a potential culprit in Caitlin's breakthrough seizures.

    You need to have a DIY program on HGTV! You could focus on medical equipment refurbishment. I can just picture you holding a saw and looking into the camera, saying, "Don't be afraid to take a saw to your uncomfortable wheelchair!" I'm so glad that you had that idea and gumption (Don't fear the wheelchair!) to implement it, with the great result of Caitlin's comfort.

    What is up with these confounded DME vendors?! Sheesh! Pester them like a fly at a picnic!

    Brandon! Yikes! Sounds painful! Hope that owie is healed well by now, and that he's wearing shoes and staying out of slimy, murky ponds! Boys!!!

    Happy to hear that your bed is working well, and that Brian has a full face mask, which I hope is working well for him. Sinus problems, maybe? Should he consult an Ear, Nose, Throat doc to get that checked out? Also, dairy can cause mucous, congestion, and sinus problems. So, encourage Brian to avoid dairy for awhile to see if that helps.

    Your kids in that photo ~ oh my goodness! Just absolutely adorable! When I showed it to Jim, I said, "Look at this precious slice of Americana!" Love that photo!

    Awww ... you got a puppy! YAY! I've never heard of Ranger's breed, but his sleek build and pointed tail sure say, "hunting dog!" He's beautiful! I can sure understand why you changed his name! Everyone should have a dog, when it's possible. Your children must be thrilled! I wonder whether Ranger will be extra sensitive and in tune with Caitlin?

    Hoping, with you, that you can carve out some getaway time, before summer concludes. The older we get, the faster time flies. So, get out there and have some fun!



    And ... drum roll ...

    HAPPY BIRTHDAY TYLER!!!

    (Don't forget to change your signature, Lisa! )

    Never argue with a woman holding a saw!

    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.

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