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Re: [Myotubular_Myopathy] update on Kyle

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  • connie guinn
    Darlene, One more day!! I know you will just love the new vent!! (Your back will especially love it!) LOL A Sit-N-Spin??? I am amazed! So, he is actually
    Message 1 of 52 , Jul 31, 2004
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      One more day!!  I know you will just love the new vent!! (Your back will especially love it!)  LOL
      A Sit-N-Spin???   I am amazed!   So, he is actually able to turn himself on it?  How vigorously?   I don't believe that Benjamin has the strength (at this time) to turn himself on a Sit-N-Spin.  One day he will, but not today.  Then again, I haven't tried him on one- so, I really don't know.  Do you think that one year ago Kyle would have had the strength to turn himself on one?   Has he had a marked increase in strength and ability during the past 6 months (compared to how strong/ able he was prior)? 
      That is a really good idea to just quit cold turkey... Benjamin is so clever- he knows that he gets to have help (ie: to be really 'lazy' and be on the vent) if he is asleep or sick.  Normally, he doesn't take a nap at all, but when he is off the vent, he will quickly "fall asleep", but the moment we put the vent back on he is instantly awake!!  What a stinker!!  Another thing he does is hold his breath.  Frustrating.  Because sometimes, I can't even tell the difference- he is such a good little actor!!!    That's cool that Kyle tells you when he needs the vent.  Does he know sign language?  We are trying with Benjamin, but he is stubborn. 
      The school sounds great!  I wish there was something similar in this area.  All we have here is just regular pre-k, and Benjamin can go once he is 3 years old.
      Wow!  Kyle takes out his trach?   Talk about manipulation!!   Does it work?  Benjamin has not gotten to that stage, yet.   Hopefully he will not scare us in that manner!!  You never know, though!!
      I enjoy hearing about Kyle and his accomplishments- very inspiring.  YOU are inspiring!!  No nurses?  Amazing!   BTW... That is really cute how you have set up Kyle's webpage!  Everytime I go to sign the guestbook, my computer freezes up or boots me off-line (not just on your webpage, it happens all the time- I'm amazed that I have been able to respond to this many emails at one time!!)
      Take care,
      ANN MILLER <dm4462@...> wrote:
      Hi Connie,
      Yes, we get the new vent next Monday.  Everyone is excited about it.  Less than half the weight of the old one. 
      About him scooting across the floor!  He likes to watch The Wiggles on tv.  So when they do their dancing and jumping around, Kyle would get so excited and start wiggling too.  So I started making up things he could do while sitting in a chair or on the floor.  We move our legs up to knee position and then straighten them out when The Wiggles are dancing and singing and twist our bodies around with our hands on the floor.  I try to make up things to keep him active and interested in the shows and the other kids help also.  His sister calls it Kyle's dancing.  Anyway, when we were at p/t one day, his therapist had a radio on and he started his dancing.  Then he saw her sit and spin and wanted to get on it.  He loves the sit and spin.  She said if he can do this he can scoot himself.  So she started working with him on that and in about a week he started scooting by himself.  She makes him scoot after every class to his chair, then he knows its time to go home.  His new therapist is great!  She asks him what he wants to do then works around whatever that is.  She says it keeps him focused and that makes him want to do it even more.
      His school is similar to pre-k, but more like therapy.  It is with the Infant and Toddlers Program.  I think it may be State funded.  They work on listening, following directions, shapes, colors, putting objects in things, matching, signing and sounds.  His teachers are therapist.  This is basically to get him ready for pre-k in January where he will be with other kids with/without disabilities.  Then I take him to the rehab center at our local hospital for his regular therapies.  The Infants and Toddlers Progam were the ones that came to our house the last 2 years and worked with him as far as therapies.  He just started the rehab center the beginning of July. 
      As for the allergies.  I will have to try Dimetapp.  Benedryl makes him sleep so much.  I was thinking about Childrens Claritin.  Kyle's symptoms are basically the same as Benjamin's.
      Kyle knows when I put him on the vent it is nap time or bed time.  The only time he fights me is if we have company, he wants to be nosey.  Kyle was around 10-11 months old.  He would pull the circuits off, cry, hold his breath, etc.   So I left it off to see what he would do.  I called his pulomonologist and told him what he had done and what I did.  He said as long as his sats were above 94 it was ok to let him do it.  There was no weaning, he went cold turkey.  After that the only time he uses the vent is at naps, night and when sick.  Until he started with this desatting, now his sats bounce like a yo-yo.  I keep him on the pulsox 24/7.  I will be so glad to find out what is causing this!  He also tells me when he wants to be back on the vent.  He knows when he needs that extra help to breath.   I agree with you!  You can't take something away from a 2 year old, once they become attached to it for that long.  That would be like taking candy away after you gave it to them.
      The problem I am having now is, Kyle likes to take the trach  OUT when he thinks I am leaving him with anyone.   Especially if he thinks he is going to scare them.  He likes doing that to people.  I think he likes to see people jump and/or the expressions on their faces.  When I get to him he is laughing and clapping his hands. 
      I'm so glad Bejamin is doing so good off the vent.  It will make things so much easier for him.  Especially learning to move around by himself.
      I've rattled on enough for one time. 
      Take care,
      --- Original Message -----
      Sent: Tuesday, July 27, 2004 8:52 PM
      Subject: Re: [Myotubular_Myopathy] update on Kyle

      Hi, Darlene.
      I hope you get to the bottom of why Kyle is desatting, soon.  It is really frustrating to not know.
      I know you can't wait for your LTV!!!  It is awesome!!  That is so good that you found the power chair at a garage sale- wow.  I think that is great that he loves it so.
      I read about him scooting himself across the floor- way to go!!  How did the therapists get him to do that motion?  I'd like to get Benjamin started down that pathway, too.
      The school/ therapy days sound great!  Is that some special program?  State or Federal, perhaps?  I'm interested in that, as well.
      The allergies that Benjamin has are familial (we all have them, and the allergies  are to almost everything:  pollens, trees, grasses, molds, red ants, etc).  Benjamin has not officially been tested, yet (they do not test on children younger than 3), but his symptoms are classic and they  mimic the rest of ours- red, swollen, watery eyes,  post-nasal drip, periodic sneezing, and lots of extra secretions.  Benedryl helps.  So does Dimetapp.    
      That is cool that Kyle pulls his circuit off first thing when he wakes up!
      So, you don't usually have to fight him about it, right?   When did you first start weaning him from the vent?  At what age?   Benjamin's old pulmo wanted to wait until he was 2 yrs before we started weaning.  Can you believe that?  I said, "Absolutely NOT!!"  Have you ever tried taking something away from a 2 year old?  -especially something  that he LIKES and is COMFORTABLE with?   Can you imagine that? ...   UGHHH!!!    We switched pulmos, and the new one  was immediately ready and willing to start weaning!  Benjamin started weaning at 11 months, and (VERY gradually) worked his way up!   Yay!  You're right, one less tube (or wire, or piece of equipment) is one more celebration!  We certainly have enjoyed Benjamin's new found freedom with him!!! 
      Take care.

      ANN MILLER <dm4462@...> wrote:
      Hi Connie,
      We have appointments for next week and the week after for tests relating to the desatting.  It is very frustrating when the doctors can't
      figure out why he is doing this.  
      We should have his new vent by the end of next week.  Can't wait to get rid of this monster we have now (LP10 - weighs as much as
      Kyle).  It has never stopped us from doing anything before, but now we will have a lot less weight.
      Kyle goes to a summer program, that is similar to pre-k, 1 day a week and 3 days a week for therapies.  When the regular school season
      starts, he will go 2 days a week for school and 3 days a week for therapies.  Each therapy last from 1 to  2 hours each, so he actually goes
      1/2 day.  In January he will go (5) 1/2  days a week pre-k and (3) 1/2  days therapy.  He has to be 3 before going to pre-k, which he will be in December.
      We actually found his power chair at a yard sale.  So the insurance company is oking the manual chair without question.  They like having the
      cheaper of the two.  We are in the process of ordering a lift to fit behind my truck to carry the power chair.  It doesn't fold, so it will not fit
      inside the truck. 
      I'm glad to hear Benjamin is doing so good off the vent.  It gives them so much more freedom not having all the hoses attached all the time.
      Kyle also is on the vent at night and when sick.  He is so good about that.  I can usually tell when he is getting sick, because he doesn't pull
      the vent hose off as quickly.  Usually he takes it off as soon as he is awake in the morning.
      What types of allergies does he have?  I have been saying Kyle has allergies; his eyes get red and swollen, start watering, more secretions,
      runny nose, wants to be held more, not a happy camper.  But the doctor says no, its just a cold.  I still want to have him tested by an allergist.
      Take care,
      ----- Original Message -----
      Sent: Sunday, July 25, 2004 7:39 PM
      Subject: Re: [Myotubular_Myopathy] update on Kyle

      We found the ear tubes to make an enormous difference, too!    I'm not sure what to think of the desatting episodes that you have described- that is not quite what Benjamin has gone through.  I hope you find out soon what is causing them.
      Yay!  for getting the LTV!!!  It IS  so much better!   More FREEDOM to be mobile!!  Does he go to pre-K? 
      Sounds like he has a lot of fun on the new power chair!   I can't wait until Benjamin gets one, too!   Here, they usually prescribe a power chair AND a manual chair (for backup- in case the power one breaks down).  But, until the power one is prescribed, we just have the one manual one.
      Benjamin is doing great with being weaned.  He is usually off all day (for anywhere between 12-15 hours), and then we hook him back up at night.  He has been doing well with it.  The only time he has problems is when he is sick or his allergies get bad, then he is not off for as long.  So far, so good. 
      Good to hear from you!  Take care,

      ANN MILLER <dm4462@...> wrote:
      Hi Connie,
      The tubes do make a BIG difference.  He can hear so much better and even seems to understand better.
      Some of Kyles desats have lasted up to 2 hours.  I took him to his pulmonologist yesterday along with all
      his x-rays for the last 4 months.  He is pretty sure it has not been pneumonias.  He's not sure what it is.
      Just that one x-ray will be junkie and then the next will be normal for Kyle.  He wants to have a nissen
      dye test done to make sure his nissen is still in place and to see a cardialogist just a precaution as there
      is heart problems on both sides of the family.  After this we will see an allergist.  He wants to rule out
      chronic lung failure as that is the last result.
      Good news!  We are getting a new LTV lap top vent to replace the old LP10, which is too big for his power chair. 
      The LTV can hang on the back of the chair, when he is at school.  Much lighter and smaller.  He is also getting
      a manual chair.  He loves his power chair.  He likes chasing Kayla around the house.  he tried going out the front
      door yesterday, by himself.  Thank god the lock worked!
      How is Benjamin doing with the weaning off the vent? 
      Hope everyone is doing well.
      Take care,
      ----- Original Message -----

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    • Kiera Merriam
      Oops... Sorry Darlene. I read your name but had Ann in mind when I sent the response... ...
      Message 52 of 52 , Aug 9, 2005
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        Oops... Sorry Darlene. I read your name but had Ann in
        mind when I sent the response...

        --- ANN MILLER <dm4462@...> wrote:

        > Hi Kiera,
        > Glad to hear Liam is doing good. I was worried
        > about
        > him. He has been in our prayers everyday. Is he
        > on
        > Robinul or anything to help with the secretions?
        > Kyle was about 4 months old before we started
        > noticing
        > any big improvements in him. His biggest
        > improvements
        > were when he came home. He came home when he was
        > 6 months old. After two weeks home, he started
        > trying
        > to touch the toys I had hanging in his crib. We
        > have our
        > good days and our bad days. But there have been
        > more
        > good than bad over the last 3 1/2 years. It's hard
        > to
        > believe he will be 4 years old in December. People
        > who
        > saw him when he was born and haven't seen him in
        > awhile
        > say it's hard to believe it's the same child when
        > they see
        > him now.
        > We will continue to pray for improvements in Liam.
        > God Bless,
        > Darlene
        > ----- Original Message -----
        > From: Kiera
        > Merriam<mailto:kieramarie1973@...>
        > To:
        > Sent: Wednesday, August 03, 2005 3:38 PM
        > Subject: [Myotubular_Myopathy] Liam Update
        > Hi everyone. Glad to hear about everyone's summer.
        > Sounds like Kyle is having a grand time. And
        > Shannon,
        > I pray that Javad's time is coming.
        > Liam is doing okay. They had been trying him on a
        > new
        > breathing aparatus, Vapotherm (widely used in the
        > States but new to Canada) but he wasn't showing
        > improvement and requiring tons of suctioning. We
        > were
        > making the switch from Bubble CPAP to Vapotherm
        > gradually, increasing the number of hours each day
        > as
        > tolerated. Isaiah and I went away for a few days
        > in
        > July for a much needed reprieve and the day before
        > we
        > got back he blocked, requiring bagging so they put
        > him
        > back on Bubble full time. We're not sure if it's
        > that
        > Liam is not improving or that the Vapotherm isn't
        > working so he's been back on Bubble now and seems
        > to
        > be doing better. Today we had him off for a bath
        > and
        > some play time, one hour total, and he seemed to
        > do
        > okay. Only time will tell.
        > We're talking about feeding tubes. At this point
        > they
        > are considering a G tube but they want to do a Ph
        > probe first to see if there's significant reflux.
        > If
        > there is, we might consider a GJ.
        > He's an incredibly playful and happy little guy,
        > always smiling and interacting, despite being
        > attached
        > to various aparatus 24/7 and having suction
        > catheters
        > shoved down his throat and nose. We've hardly
        > heard
        > any sound coming out of his mouth until the other
        > day
        > when he discovered that if he growls, he becomes
        > much
        > more audible. It was quite funny to watch.
        > Anyway that's all for now. Thanks all for being
        > there
        > and hope you enjoy the rest of your summer.
        > Kiera, Isaiah and Liam
        > __________________________________________________
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