Friday, April 30, 2010

Tag Team Therapy and Blog Maintenance

Every four to eight weeks, we pack up a bunch of toys and other paraphernalia and head off to Chicago to La Rabida for Tag Team Therapy!  This is a session - usually 2 to 3 hours - of intense Physical, Occupational, and Speech Therapy services.  Intense for ALL of us!  This is what we did on April 27.

These services are to take the place of what Christopher would normally be getting from the school district.  Not just to take the place, but go over and beyond.  The school district does not have the time or support to do this type of therapy.  La Rabida is primarily a rehab hospital for children.  Many of the children there  have brain injuries, severe burns, amputations, etc.  These therapists have the updated training and experience that school therapists just don't have the chance to get. 

So, we take our own toys for two reasons: #1. Our therapy appointment takes place in a room in the therapy department as opposed to the big therapy gym on site.  While there are lots of neat pieces of equipment up in the gym, we don't have them at home and we can't control how clean they are.  I know they wipe them down, but better be safe than sorry. Christopher cannot be exposed to all of those people.  He wears a mask when we go in until we are in the therapy room.  #2. We DON'T have all of those neat things at home!  We have lots of our own stuff, and these are the things that we use everyday.  Christopher takes a long time to warm up to ANY new toy.  We have to utilize our time at therapy wisely.  We don't have time for him to get used to their version of the same toys we have at home. 

Here is a picture of our "toy tote".  We love these Ziploc Flexible totes.  This is the smaller one.  They have a larger one, twice this size, that we use to store seasonal clothes, etc.  We try to pick a representation of ALL of the things that we are doing since the last appointment.  For example: one set of flashcards, one book, one push  button toy, etc. 

On the Physical therapy/occupational therapy front, we are having some issues.  Not with our therapists, they are wonderful!  With Christopher....well with his legs.  Christopher has had to over come A LOT in his six years.  He has the Down syndrome hypotonia, brain damage, heart and lung issues, and he is considered as Failure to thrive (FTT), so his nutrition has been less than optimal.  There is also debate over whether he is missing entire muscle groups, or if he has a metabolic/mitochondrial disorder that effects his ability to make muscle tissue. He is still unable to sit independently, although that is getting better.  We will never say never, but there is little possibility that he will walk for long distances on his own.  Our goal is to get him the ability to transfer himself from his wheelchair to the bed or toilet, walk across the room, or at least be able to stand.

Back to the crazy legs.  With the hypotonia, Christopher has always been able to, and does on purpose, dislocate and reduce (Put back) many of his joints.  Drives us nuts, but it is what it is. Well, his kneecaps were no exception.  When he would bend his knees, his kneecaps would slide to the outside of the joint.  We were continuously putting those darn kneecaps back in to place, but it seemed as if Christopher hurt less if the kneecap dislocated when he bent his knees.  Fast forward to today.  His kneecaps are now permanently dislocated.  See the picture below:

You should be able to see the entire joint is visible and the patella (kneecap) is sticking out on the outside of the joint.  The PT and OT believe that part of the problem is the ligament that runs from the hip down the outside of the femur (thigh) and connects to the patella.  This is tightening up, while the counterpart ligament on the inside of the leg is stretching.  This is causing not only his patella to be permanently relocated to the side of his knee, but it is making it so that it is impossible to completely straighten his legs.  The bottom parts of his legs are being pulled out sideways to so that it looks as if he is severely knock kneed.  His legs are bent at about a 30 degree angle.  See pictures below:

Obviously, we are doing all that we can to correct this as soon as possible and WITHOUT surgery.  We have tried taping, splints, etc.  Right now, it is too bad to even put him in his stander.  So, next appointment the PT/OT with do therapy and brainstorm, then we meet with the Ortho doc.  Pic below is with splints on.  Notice how they are pulling at the top to the inside.  This is because of the knees.

Speech therapy was mostly working on our communication skills.  We still hope to get some verbal speech going or at least clear speech for the few words that he has.  We are still working towards less aversion, using the muscles in his mouth and neck more, and less tongue thrust.

So after therapy services, we went back to Lincoln Park Zoo.  We have been there before, but it was so hot that most of the animals were inside.  We decided to try to go again.  We were so glad we did!  We love LPZ

As you know, Chicago is known as the Windy City.  It was living up to that on Tuesday.  Here are a few pictures of Lake Michigan outside La Rabida that day.  I have never seen whitecaps the way they were that day!  I am sure there are days when they are bigger, but you could have easily surfed that day.  :)

Here is a montage of our zoo pictures.  Some of the pictures of the inside exhibits are a bit dark.  You can see them easier on some computers, so I included them.  Christopher really enjoyed the monkeys (the Chimps seemed to like him as well.  They followed us around), the meercats, and the fish.

I am working hard at getting the pages at the top of the blog updated with links.  Please check back often to see if there is something you can use.  Leave me a message if you find something you like, something that doesn't work, or if there is something you would like for me to add.  Many links fit in more than one sections, so if you think something needs to be listed in more than one place please let me know.

Have a great weekend!



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Thursday, April 29, 2010

Playing Catch-up!

WOW!  The last two weeks have been crazy around here. Things have been really up and down. 

We are trying to go through things, throw out what we don't need, pack what we don't need right now, and finish up small little things to put our house up for sale.  While we are getting rid of a TON of stuff, everything is torn out right now.  Our house almost looks worse than when we started!

The last 5 days have been particularly rough - especially in the Down syndrom and Heart kid community.  In the last 5 days, we have lost two friends:

First, there is Carly.  She was 8 years old and died last Friday.  This was totally unexpected and it has sent shock waves through the DS community.  So many of us have never met IRL (in real life), but are still close through our blogging and facebook communities.  If you would, please say a little prayer for Carly's Mom, Dad (who had to do CPR until the ambulance arrived), and her older brother and sister.  If you are so inclined, please stop by Michelle's blog.  She has put up a button to donate.  On behalf of the DS community, a fund has been established to pay for a wonderful artist named  Michael Johnson, who also has DS, to commission a painting of Carly for her family.  Any money over and above will be donated to Mott's Children's Heart Center per Carly's family's wishes in her obituary.

Our next friend is a local heart buddy.  I have asked for prayers for Ashton before.  Sometime on Sunday night or Monday morning, Ashton had a major stroke.  He was still on a bypass machine, but was being weaned.  He was going to be listed for transplant.  Sadly, his family had to take him off of life support on Monday afternoon.  He had such a following!  I was never able to personally meet Ashton, but I have talked with his Grandmother and Dad.  They are both wonderful people.  Ashton was a first degree black belt in TaeKwonDo, and attended the same studio as my nephew.  He will surely be missed, but we are happy that he is now able to run, and spar, and do all of the things little boys should.  A memorial is set for this Saturday, May 1 at Bismark school.

The next person is my friend, Phred from Alaska.  We have known each other for years via the internet, but never got to meet.  Phred was crazy as a bedbug!  If you look up Mountain Man or Hillbilly in the dictionary , it is a sure bet the picture would be Phred.  We may not have always seen eye to eye on things, but he was one of those rare birds who knew who he was.  He had no trouble expressing his oppinions - wanted or conventional, or not - but he had no trouble with others doing the same, whether you agreed with him or not.  Many of those ideas where greatly challenged this past fall when he became a Grandfather.  His Grandson was born with both Trisomy 18 and Trisomy 14, plus a translocation.  This was a defect that the doctors never thought the baby would survive - even through the pregnancy.  So far, he is doing amazingly well!  It looks like he is the only recorded person in the U.S. with this particular genetic disorder.  On March 25, Phred went to sleep and never fully woke up.  He had a massive stroke.  His family took him home from the hospital to make him comfortable and he passed away on March 29, 2010.  We noticed that he had been missing from our forum and somebody contacted his wife.  She forgot to notify his on-line friends.  We will miss you Phred!

So now that we are all thouroughly depressed, the results from all of our recent appointments....

Monday, the 19th, we went to the Cardiologist in Peoria.  Christopher* had an ECHO.  The results were GREAT!  Tricuspid regurgitation (or leakage) was minimal. Mitral valve regurge was downgraded from moderate/severe to mild/moderate.  No sign of pulmonary hypertension returning, and mild thickening of the septum that was repaired. (His septum is competely patch material - now is growing scar tissue and thickening making it less flexible. For obvious reasons, this is watched VERY carefully).  We don't have to return for a year!

Tuesday, the 20th, we went to Wheelchair Clinic at LaRabida in Chicago.  We are required to go every 6 months, or it voids the warrenty on the wheelchair.  Unfortunately, we don't use his wheelchair that often.  He does not sit in it all day, he is not transported in it to school or anywhere else, and it is HEAVY!  It takes two of us to lift it into the back of our van.  Since my Dad has had colon cancer surgery and hernia surgeries, he can't  isn't supposed to lift over 10 lbs. So, Christopher will have this chair for a L-O-N-G time. They had to order a new back for the chair (I think everything is custom made) since he just keeps getting longer instead of gaining weight.  We drove to Chicago, went to clinic, and was back home by 12:30 that day! Remember, this hospital is a good 3 hours away, depending on traffic.  We didn't mess around that day.  Something fired us up because we ended up going to get curtains for 4 rooms in the new house, paint for 5 rooms, rugs for 2 rooms, completely changing the plan for one room in the process, and stopping by a couple furniture stores to look for a few things we need!  While at Menards, (after Mommy used Cavi-Wipes to sanitize them) we put Chistopher in a swing that is set up there.  We have the same one for him at home, but aren't putting up the set this year because as sure as we do, the house will sell!  He really seemed to like it.  Here are a few pics.

Friday, the 23rd, we went BACK to Peoria to see the GI doc and the Endocrinologist.  Even though the scales indicated that Christopher had lost a pound since his visit to the Cardiologist that Monday, the GI doctor was happy with his overall weight gain of 1 1/2 lbs since October.  He added some calorie booster to the formula cocktail and a return visit for 6 months.  The Endo doc was underwhelming.  I am not sure I am too comfortable with her.  I had some questions that I asked her several times and she ended up never answering one of them.  Christopher's TSH levels supposedly went up 3 points in 3 weeks, and she sisn't wasnt to repeat the test to make sure what was going on.  We have such trouble with Peds. Endo. docs.  They just don't seem to want to do much unless your child has diabetes - not something we want to visit thank you.

Well this post in long enough.  I will update our trip BACK to Chicago yesterday for tag team therapy services and a trip to the zoo - complete with picutes!



*OK. So I originally was only going to use "Lil' Man" on the blog as a pseudo security measure.  It is too much work and most of you who come here already know who Christopher is anyway!  LOL! So, I am going back to using his real name.  :)

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Sunday, April 18, 2010

Busy Week!

Well, we have a busy, busy week this week.  Monday to Peoria for Cardiology appointment, Tuesday to Chicago for Wheelchair Clinic, Wednesday to the dentist for me, and Friday back to Peoria for GI and Endocrinology appointments!  Whew!

I will update when I can.  Have a great week!



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Friday, April 16, 2010

Things are a changin'....

Hello all!  Just wanted to drop a line to say that I am going to be working on the blog.  If you can't see something, I am probably busy editing!

Notice the new page additions at the top.  I will be adding to these regularly.  I have probably thousands (no joking) of links regarding homeschooling alone!  Don't be fooled by the titles.  There will probably be something on each page for everyone when I am finished (if ever.....LOL!). 

For all of my blog friends, I am having trouble with my comments on others' blogs - only blogspot blogs.  I will write a comment and the entire thing disappears!  Please know that I am visitng your blogs, even if my comments do not co-operate.

Not much to report right now.  Busy week next week with appointments: Monday - Cardiology, Tues - Wheelchair clinic, Fri - GI  & Endocrinology.  Not too bad unless you consider each of those is 200 miles away.  Our van is going to be our best friend!

Have a great weekend!



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Wednesday, April 14, 2010

Parable of A Pencil

Thanks Sherry!   I received this on one of the Yahoo groups I belong too.  Enjoy!

Parable of the Pencil
The Pencil Maker took the pencil aside, just before putting him into the box.

"There are 5 things you need to know," he told the pencil, "Before I send you out into the world. Always remember them and never forget, and you will become the best pencil you can be."

"One: You will be able to do many great things, but only if you allow yourself to be held in Someone's hand."

"Two: You will experience a painful sharpening from time to time, but you'll need it to become a better pencil."

"Three: You will be able to correct any mistakes you might make."

"Four: The most important part of you will always be what's inside."

"And Five: On every surface you are used on, you must leave your mark. No matter what the condition, you must continue to write."

The pencil understood and promised to remember, and went into the box with purpose in its heart.

Now replacing the place of the pencil with you. Always remember them and never forget, and you will become the best person you can be.

One: You will be able to do many great things, but only if you allow yourself to be held in God's hand. And allow other human beings to access you for the many gifts you possess.

Two: You will experience a painful sharpening from time to time, by going through various problems in life, but you'll need it to become a stronger person.

Three: You will be able to correct any mistakes you might make.

Four: The most important part of you will always be what's on the inside.

And Five: On every surface you walk through, you must leave your mark. No matter what the situation, you must continue to do your duties.

Allow this parable on the pencil to encourage you to know that you are a special person and only you can fulfill the purpose to which you were born to accomplish.

Never allow yourself to get discouraged and think that your life is insignificant and cannot make a change.

Unknown Author.




Sunday, April 11, 2010

I FOUND IT!!!!!!

Following is a video of what the seizures look like that Lil man has been having lately.  Now the video is a little scary if you are not used to seeing a child have seizures.  Also, in the video, the little girl is coming out of the seizure...In Lil Man's case, he would look like he was "coming out" of the seizure crying, then go back into it again.  The last time this went on for almost an hour.  These aren't little twitches - when they happen, he goes all the way.  :(  I hate that I have to find it, but at least we have something to show the docs if it happens again.



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Saturday, April 10, 2010


We have a couple of updates on some of our friends:

First, Our local guy, Ashton.  They just transferred him from Peoria, IL to Milwaukee, WI BY AMBULANCE tonight.  I can't believe they went that far in an ambulance.  I am sure it was an exciting ride.  It took two ambulances and an entire team of doctors, nurses, & EMT's went with.  He and his entourage arrived safely at Children's Hospital of Wisconsin (Yes - this is our stomping grounds).  Docs there are evaluating him tonight and may be doing another surgery on him tomorrow. 

A couple of weeks ago, his heart stopped while he was in the gym at school.  Luckily the nurse was there, did CPR, and the school had an automatic defibrilator available.  It took 3 shocks and 14 mintues to get his heart going again.  They flew him to Peoria where he has had 4 open heart surgeries in the last few weeks.  He was on ECHMO, and they have been able to discontinue that.  However, his left ventricle is not responding as it should.  Our wonderful docs in Peoria knew they were at their limits and arranged to transfer him to Herma Heart Center, CHW, Milwaukee.  Please keep Ashton, his family, and the docs/nurses in Milwaukee in your prayers.

Next up, our little guy, Malachi.  He was officially diagnosed with Moyamoya syndrome.  He will need brain surgery.  Unfortunately, he also has that nasty metapneumo virus - a cousin to RSV.  None of the Neurosurgeons will sedate him to do the Angios and other tests needed before surgery until that virus is gone.  Please keep Malachi, Erin, Josh, & Elijah in your prayers too.

As for us, pretty quiet here.  Trying to clean up still and get rid of stuff.  We have been able to do a lot of "school" this week.  I realized I am going to have to re-do all of my lesson plans.  Lil Man has blown everything out of the water. Yeah!  I think we are going to try for a more structured school day.  Right now, we just have fun.  He doesn't realize that stacking blocks, or using a pegboard, reading books, or watching a video is all "school".

I am going to adapt Sue Patrick's Workbox System into our homeschool.  There are lots of versions out there - almost as many as there are people using it.  If I can take away a toy from Lil Man and put it up one day, and he remembers where I put it and points it out the next, he is ready to move up to "real" school.  :)  I have noticed that he is starting to anticipate his favorite parts of shows that he watches often - like Sesame Street skits, & Kipper the Dog. 

Thanks for stopping by.  We wil keep you all updated on how things go. :)



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Monday, April 5, 2010

Prayers & Purging

First, I would like our blog friends to say a prayer for one of our special buddies.  You can go Here to follow them.  We have been trying to make time to meet IRL, as they live a few hours north of us.  Erin posted that Malachi was admitted to the hospital last night with RSV and a major stroke that is affecting one side of his little body.  Please pray that they can figure out what is going on and get him on the road to recovery quickly.  His brother, Elijah JUST came home from the hospital from his open heart surgery.  If you are reading this Erin, we are keeping you Josh, Malachi, and Elijah in our prayers!  Hugs!

Outside of that, we have not had much going on around here worth bloggin about!  :)  Big Chris & I are busy attacking our house - purging, packing, & getting ready to move.  We have WAY too much stuff!!!!  What isn't good enough to go in to the rummage box is going out on the curb.  You would be AMAZED at the crap people will pick up.  Even so, I am sure the garbage men hate me right now. 

This week we go to the ortho doc on Thursday.  We will see what he has to say about those kneecaps.  I do hope we can get away with NOT doing surgery to put them back in place.  :(

Next week is VERY busy.  We go to the Cardiologist in Peoria for our, now yearly, appointment.  Going to push for some blood work, as Lil Man has just been "off" lately.  I hope it is just allergies.  Then Friday, we go back to Peoria again for appointments with both G.I and Endocrinology.

Hope everybody out there is doing well!



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