First CP support group

We've been on yahoo support groups for various things; infantile spasms, epilepsy, cp moms, homeschooling special needs, special child exchange group.  They have all helped tremendously with questions we might have along the way.  I strong suggest looking into them if you haven't already.

This weekend we attended our first (live and in person) support group.  It was arranged through our PMR head nurse at the Children's Hospital.  I'll be honest with you, if we hadn't had a doctors appointment the week before, and Debbie (the nurse) hadn't asked that I bring Daniel and his AAC device, I probably wouldn't have gone.

Why?  

Cause I've always had this thing with being in rooms with many people, I dread it.  I dread the idea of getting there on time, the whole set up.  But once I get there, I always have a good time.  So I'm glad I went.  I'm glad we went.  It got Daniel use to being around a large group of people, and he did awesome with his sensory issues (loud noises, tons of people, weird environment), and he was using his device out in public where people were asking questions of him.

So Thank you Debbie for "making" me attend and for all the information you have put together.

One of the cool things was he made it on the agenda for the meeting!  How cool is that? :)

They had some vendors there that were available to get additional information for different therapies, meeting some companies that most likely you'd need to talk to at some point in time through your journey with CP.  Then of course they opened it up for questions to ask the doctors that were there.  Very informative.  Plus it was just nice to go and meet some other people that are some where on the same road you are.  Its nice to be able to help other people avoid the giant pot hole that you know is in the road ahead of them.  Its also nice when parents of the older kids (18+) give you an idea of the different things you'll need to encounter along the way.  Things you hadn't even thought about like guardianship, social security, and other things like drivers licenses and wanting to do the things that typical teenagers will do.

So I thought I'd share a tad bit of some of the information, just in case it might help someone along the way.  Once your child is diagnosed, people start to assume that you have some medical degree and don't need things explained, so we often walk around in a bit of a fog regarding some of the terminology.

This little blurb happens to apply to Daniel.  Sometimes knowledge will stop people from being hesitant to approach Daniel and interact with him.  The spasticity he has might make him a little different on the outside, but on the inside - he is just like anyone else, he wants to play, have fun and be accepted just like you.

What is spasticity?

Spasticity is a muscle tone disorder in which some muscles are overactive (shortening and tightening) - causing stiff muscles, awkward movements, and exaggerated reflexes.  Spasticity is seen with cerebral palsy, traumatic brain injury, stroke and spinal cord injury.  Spasticity occurs when the brain or spinal cord is injured, causing nerve signals to over-stimulate muscles.

The degree of spasticity can vary from mild muscle stiffness to severe, painful and uncontrollable muscle spasms.  Spasticity can affect a child's comfort level and movement, making it difficult to do activities such as sitting, eating, standing, dressing, and walking.  Spasticity can also cause muscle contractures, which are fixed, abnormal joint positions that may lead to deformity or the inability to move the related body part.

In addition to spasticity, children and adults with brain or spinal cord injuries may also experience other neurologic (nerve-related) conditions, such as weakness and poor coordination.  These other conditions may actually be more disabling than the spasticity.  Reducing the spasticity may be helpful in these situations, but does not "cure" the condition.  In some cases, some spasticity in the legs may help with standing.

Besides, spasticity, there are other muscle tone disorders that can cause abnormal movement.  Two examples are: dystonia, which causes abnormal posturing; and choreoathetosis or writhing movements.  Management plans for these disorders may differ from management plans for spasticity.

Spasticity can be managed in many ways - ranging from simpler methods such as stretching, bracing and positioning, progressing to use of oral medications, to intramuscular injections and/or surgical procedures.  Using medications may be helpful when spasaticity happens in many parts of the body.  In children with cerebral palsy, percutaneous tendon lengthening is a common form of surgical management.  Currently, muscular injections and new surgical methods are being used to effectively improve function and mobility at various levels.

Daniel has what is called spastic quadriplegic cerebral palsy 

Typically when you think of CP, you think that there was a traumatic birth and lack of oxygen.  This is not the case with Daniel.  He had a typical birth, but during the pregnancy his brain did not develop typically and it has a malformation which in turn causes his CP.

To date so far we have done the daily medication to help with the spasticity, we have done the botox along with the alcohol block (December 2011).  We also use his leg braces, and wrist braces to help him not get contractures.  We have also done the casting (which we will be doing again in the next few months for his ankles).  We have also been in Occupational and Physical therapy for the past 6 1/2 years, multiple sessions per week.

Other things we have tried such as LOKOMAT, ABR therapy, ABM, swimming, and hippotherapy.  So if anyone wants our take on them, I would be more that happy to share, just let me know  I also generally have some contact information or will help you find it.

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Twenty Four days into 2012

Wow, can't believe it is the end of January already! Time sure flies by when you have 800 things going on around you! Of course we still have all of Daniel's things going on, but there are TONS of other things going on too, and who knows where that will lead us! At the end of December I had all these grand hopes and thoughts of what was going to happen in 2012. Well day 24, and we are already off on some of the items on the list! A few glitches have been thrown in the mix, like the strong suggestion from his PM & R doctor to do serial casting on Daniel's ankles before June rolls around. This way if the casting doesn't work well enough he will be able to get the botox (if needed) in June along with the rest of the areas. Casts? Really? It could be worse, but I remember when we did it a couple years ago and he was sooo heavy! And that was BEFORE he weighed 50+ lbs!

I am proud to say that we have kept on track with eating more "homemade" dinners.  We use to eat out A LOT, just because of the schedules, timing issues and plus obviously just the ease of it.  Well one of our goals is to start eating better, making meals, packing lunches and just saving money for the future.  

I use to have this addiction to buying those little Betty Crocker type cookbooks that are at the check out in the grocery stores.  It was really getting bad!  That was a few years ago, but I still have them all.  Over 100 different ones...I'm not kidding. I even have them numbered so I know what book to grab and get the recipe from. We pick a new recipe out of the books (Lonnie tends to stick with the same themed meals) to give us more variety, and plan a couple weeks at a time, go grocery shopping and have everything set ready to go.

 These are the ones for this week. I'm not a good cook by any means, I have a hard time boiling water sometimes. :)

 But so far, Lonnie & Daniel haven't gotten sick from anything.  Any leftovers we are using for Lonnie's lunch the next day.  Because Daniel can only eat pureed foods we are able to take most of what we eat and blend it up, or chop it fine enough so he can eat it.  Sunday was this Chicken Chili Dumplings (dumplings were my favorite!) Monday was Stuffed Peppers (above), and tonight is something Lonnie picked - Ham, pineapple pie thingy.  I'm not too sure about it but I figure if I am making Lonnie expand his tastes, that I better play along too! 

And of course, Daniel helps out too while I am cooking.  Here he is sorting his planets.  He is learning to scoop his planets onto a spoon and more them to another measuring cup.  As you can tell from the perplexed look on his face, he is working hard trying to figure out why the heck they keep rolling off the spoon!

Cyclone Daniel

The storm hits this house on a daily basis. No matter how much I try, it always ends up with toys and miscellaneous stuff spewed everywhere!

EVERYWHERE!

 Daniel continually tells me with the AAC device "Where's my money?" so we are slowly starting to work on money.  I think he's getting it because now he doesn't ask for coins, he was the bills!

 EVERYTHING comes out, we bounce from one toy to another, and throw in some educational stuff with the AAC device.  We also switch up which piece of equipment we are in.  A lot of moving from stander, to walker, to mygo chair, to a different walker, to bumbo seat.  

Variety - the spice of life!

 I won't blame everything on Daniel. I will take blame for the liter of pop that exploded in the freezer yesterday and the jello that was supposed to be thickening that I spilled all over the bottom shelf in the fridge.

So while I do those little tasks and pick up the mess....

Daniel will enjoy a movie on the computer that he has probably watched 800 times and I can say the lines for each scene!  

Brilliant Idea!

Ahhhhh....headphones!(I should have thought of this before!)

Well Hey There!

Talk about being busy for a little while!

Figure I'd give a small update on whats been going on around here for the past few months. I have been sorely lacking in keeping this blog updated. Seems I go in spurts, although I have been updating on Facebook more often than anything.  Look me up over there if you're interested.  I still lead a somewhat boring life in the FB world too! :)

So, Daniel is your typical 6 year old boy.  He is very opinionated and temperamental.  Has his good day and beware of the bad!  But for the most part, he is a happy go lucky kiddo.  He is rocking his AAC device -PRC ECO2 with ECOpoint.  We mix it up a little differently than most families I've heard of.  Some of the user area in his device has 15 cells, others have 60, and them sometimes 45.  It probably isn't recommended, but it seems to work for him.  Gives him practice getting the smaller cells, but he still can get his larger cells without the frustration.

 This has to be one of Daniel's new favorite pages.  Granted its not really working on his language stills, but boy does it give him the independence and freedom he loves.  This screen is programmed to change the channel and turn the TV on/off.  There is also a link from the "movie" cell which goes to a page with 60 cells for all of his movies.  Kid loves the power, and getting a reaction from changing channels on Dad when some sports stuff is on!  I taught him well ;)

Daniel recently had botox and an alcohol block.  We were very iffy on the procedure.  Not really the procedure itself, but they knocked him out to do it this time because of the block and also how many pokes he was getting.  For a brief moment, Daniel was a human pin cushion!  Thankfully he wasn't aware and didn't seem to have any soreness afterwards. He did milk it for most of the day and just crashed on the sofa, spitting out commands for me from his AAC!

Here is a super cute photo of Daniel playing with one of his many games he got for Christmas

And of course, he still loves to do crafty things...Here is the masterpiece of mixed colors of poster paint....we call it "Doo-doo doo with a little blue" off the paper!  See that evil look??  He thinks he's funny....not so much! ;)

Daniel also continues to be a very busy boy.  We are doing a mix of homeschooling with visits from the school district teacher.  We also have home bound services with Speech, PT, OT and adaptive gym class.  We still do his outside therapies also, so make daily trips for our outstanding Speech, OT & PT.  So to give you a quick shot of what we do weekly (does not include any doctor visits or those types of appointments)

Monday- home bound teacher, outside speech

Tuesday - home bound OT/PT (together), outside OT, outside PT

Wednesday - home bound speech & teacher (together), adaptive gym

Thursday - outside speech, outside OT, outside PT, adaptive gym

Friday - home bound teacher, home bound speech, outside speech, adaptive gym

And shoved in between all that we have homeschooling and other fun stuff (like home business I'm trying to launch)

So I'm sure you can see where we have been in the past few months!

Hope everyone out there is well and your children are flourishing and will continue in 2012.

Hello Long Time Friend

Its been a while eh?

I think when we started this blog for Daniel is was to keep family and friends updated, then it kind of migrated into something that I used for my therapy.  It kept me sane, let me vent when people were not so nice, and kept me in contact with the other SNF (Special Needs Families).  I used it to keep up with Daniel's progress, and to hopefully help other families learn from some of our experiences.

Well in the past year or so, I  think I didn't need the therapy outlet as much, that I learned to just accept things (no not give up, but come to grips) that Daniel is Daniel and I cannot fix everything that people don't accept as 'normal'.  I believe in the last year, that I finally realized learned to say screw those people, that this is normal for us.  That Daniel is perfect the way he is and I am not trying to "fix" but now I am here to help him use his skills to the best of his abilities.  And believe me, he has many skills.

 No, he is not walking yet or talking in the way people consider 'normal'. 

Will he?      

Maybe.

When?       

 I don't know.  I don't care.

  

Do I want him to?      

Sure, who wouldn't want him to?

Will I feel he is less of a person because he doesn't do those things?  

Absolutely not.  He is remarkable in what he can do, and I am very proud of every single thing he does.

Does this mean I've given up?

Nope, I'm just refocused.  I still believe Daniel can do all these things, and he will in his time, when and IF he feels he can.  When I say refocused it doesn't mean that we aren't doing the same things as before, the therapies and such.  We are, but my end goal in not  HE WILL WALK, it is more along the lines of what can we do to aid him in moving, whether it be in a walker, stander, power chair, canes, rolling, crawling.  Physically he is probably going to always have some issues.  Ok....so lets move on....so what.  We'll deal with it.

Daniel talks.  Maybe not how your kiddo talks - I don't care.  He talks so many ways.  Eyes, expressive, pointing, nods, and of course his AAC device (ECO EyePoint).  So we will work on this a lot.

So to catch you up a little bit since I hadn't been needing the self therapy of venting on the blog.  Many things have changed, so I find myself back to writing the blog for therapy.

I'll just give you a brief little list of some of the changes

Daniel is now 6 years old.

We did some hippo therapy and some swimming, which we loved but because of medical issues we can't continue with that.

He started having seizures again, but BIG, SCARY ones. (the Infantile Spasms were indeed scary too .  Who am I kidding? - all types of seizures SUCK!)

He started taking Trileptal in additional to his other seizure medication (Vigabatrin) in hopes to get the seizures under control.

He is not in the public schools, he is considered 'home bound' and is doing home based school.

He still gets his Occupational, Physical and Speech therapy multiple times a week

I am still considered 'the at home mom' although it seems like we're never home.

I still work my little side business of making party crowns, so that keeps me busy in my down time.

I think I'll be updating more, not that anyone is still reading out there, but like I've said it makes me feel better to get my feelings out without taking it out on anyone in person :)  

Here are some photos with fun things we've been doing...

June has just SUCKED

Schools out and summer is suppose to be this glourious time, beautiful weather yada yada yada...

June SUCKED, its plain and simple.

Between me being sick and having surgery, recovering from the issues with that.  Daniel being sick, teething, doctors appointments and just not sleeping well.  Other peoples scheduled with the month of June....Therapies have almost been non existent. Speech WAS completely out because of his therapists surgery, I totally understand...shit happens....life has to make adjustments- COMPLETELY understand, when one of the therapists has to call off occassionally because of outside life issues.  I realise things aren't perfect and that they have lives that they need to take care of too, but I do not EVER attempt to make someone feel like crap.

But nothing is more crappy feeling than KNOWING you're missing all these dates-feeling bad about them, then for outside sources to make you feel guilty about it too.  Then there is no one to ask for help because the ones that you would trust with your child....have their own issues to worry about, or just simply are too busy to have to deal with your life.  Dad can't miss work or there is the possibilities that that would make you look bad at work and you'll be let go.

So what have I learned during June?  if your the stay at home mom, your on your own.  People tell you to take are of yourself cause if you don't whose going to take care of Daniel....well I understand that all fine, but its a matter of getting all those appointments to coexist with the other scheduled appointments and trying to figure out what your going to do with the little one while you are getting your exam at the doctor! Your that when your appointment is, is when you're suppose to be driving to another appointment or your child needs to be feed before driving to the next appointment.

Being at "stay at home mom" is kind of a weird title to be called....because sometimes I feel like I am a "never at home mom".

Yep another "bitch"post. 

Source: None via Katey on Pinterest

May June Update

Lets see if I know where to start to do updates

• Daniel is HUGE.  Well in my eyes anyways.  48" tall and 45-50 lbs  To me that is one big kid
• He just got Botox for the first time in both of his legs between the buttock and knee. 3 shots each leg (I believe a total of 125 was the dosage) and two shots in his left forearm to help with the bending in his wrist.  His hips look good...according to the dr.
• We haven't been to speech therapy in about 6 weeks because his SLP had some medical issues but we are hoping to get back into it very soon
• We got his EyePoint and are hoping to get heavily into it with the SLP again.
• He has used the Spider Cage a few times at PT/OT but we've missed a lot this last month as Daniel and I have had some medical issues.  Also the therapists had some end of the school year things with their kiddos or just vacation time.
• Had our IEP.  SIGH!  As far as I can say right now it turned out pretty good with the help of the advocate.  Daniel will be in general ed class with a total of 30-90 minutes a week in the special ed class.  He will have two hours a week of adaptive gym from outside sources because they are not equipped to do it.  So we are currently doing horse therapy and swimming, fully paid for by school district.  They are also modifying the school areas and getting equipment that will be needed for Daniel.  They do not have other children like Daniel. Although to throw a big "oh crap" in there, the class just got changed from a 1/2 day to a full day - I am not sure how we are going to be able to do this.

Other than that....we are about the same