Before the World Ends.....

Hello all!!!  The fact that I am posting might be confirmation that the world really IS going to end today!  LOL! (Just kidding)  I actually had 2 posts ready last week when Blogger broke.  They never came back. :(  So, I am going to give the short version here.

We have been SUPER busy. We are going to Chicago at least once a week, sometimes more. Christopher is getting PT every week, and we are trying to cram in as many doctor appointments as possible while we are up there. Christopher is doing GREAT in PT. He is getting in the pool a couple of times a month. He really likes the pool.

PT Pool at La Rabida

Medical stuff is going to have to be a whole other post - we don't have all day here. LOL!  Most of you know that Christopher is on what is called a "Medically Fragile and Technology Based Children's Waiver".  This waiver does away with income requirements for a medical card and helps to provide in-home nursing + respite, and a few other things. Our renewal was due in March - we missed it by one point - because Christopher wasn't hospitalized enough!  The long and short of it is, the criteria they use to decide if you are qualified are definitely biased towards kids with trachs. NOT that children with trachs do not need the waiver - just that there are some children who are medically fragile and don't have trachs that also need the waiver. Needless to say, we are appealing that decision. That involves a TON of doctor appointments, lawyer visits, etc.  I'll keep you updated.

Big Chris and my Dad (Papa) started taking TaeKwonDo classes in March! At 69, I think Papa is the oldest person at this studio.  They seem to be enjoying it and are getting in shape - I think. I guess stooped over and gimping is a shape. LOL!  They have already been tested and have received a promotion to the next belt - orange! My nephew also attends and is a 2nd Degree Black Belt at age 10. He teaches classes and belongs to a demo group.

Big Chris also has more news! He has decided to get Baptized in our church!!!!!  This is a big step, and we are really proud of him. He decided this on his own. Things worked out so that he will also be confirmed the same day. We are also lucky that our new Bishop of our diocese will be visiting that day as well. So our regular priest will be Baptising him and our Bishop will be Confirming him!  Christopher will also be getting re-dedicated. He was Baptized when he was a baby. We had to do it quickly as we thought we were going to have to Life Flight him to Peoria to go straight into open heart surgery. He can't be Baptized again, but he will receive his candle as he should have if he was Baptized in the Church originally. That will be happening tomorrow - May 22, 2011.

Our house is still for sale. We have had a few people look and a couple came back for the third time on Thursday to decide between this one and another one. We haven't heard anything yet, but keep your fingers crossed.  Our new house has been painted. About two weeks after we got the basement family room set up in the new house, it flooded from all of the rain we were getting. It hadn't done it in over 3 years, so we thought we were safe. :(  We had to clean up an re-group. We are going to be working hard on getting the rest of the house cleaned and things put away as much as possible in the next few weeks.

I am also going to be re-organizing the blog a bit. Don't get upset if a link isn't on the side - just check the pages above.  I am going to move most of them up there.  Our blog roll is just getting too long to keep on the side of our blog!  :)

I will be doing a separate post on this, but Christopher was lucky enough to win an iPad2 and $500 worth of software from Marissa's Bunny!  Stop on over for your chance to win one too! 


Hugs!

Steph

Busy, busy.....

March has been a busy month for us!

We are getting things put together at the new house.  No, we haven't moved yet. We have moved pretty much all but the are essentials to the other house!  We have been weeding stuff out,but we STILL have too much IMHO. We were finally able to afford the painter to paint all of the basement level. Now we can start working on getting things put away. Christopher's home school room looks like a tornado hit it.  :)  Still trying to figure out the best way to organize it.  That will probably change any number of times before we figure it out. We want to try to have as much done as we can, and as many things put in their place before we move in for real. We had two weeks to pack an entire house the last time, and be out on Christmas Eve! We are still unpacking boxes from THAT move.  We won't ever do that again.

We showed the house 3 times in one weekend at the end of Feb/beginning of March. We have had nothing since. I believe we are going to try for a different agent and see what happens.

Christopher was doing really well in therapy for awhile.  Suddenly, he started getting puny on us. And by puny, I mean our poor PT was trying to hold up a wet noodle! He had lost more weight too. So, we talked to our ped and ended up checking him into the hospital a couple of weeks ago for Failure to Thrive. I won't go into all the details here, but it was not a very impressive stay this time around.  However, the GI decided to REDUCE the number of calories in his diet. He was on 4800 calories per day when we checked him in, and losing wight. So far, it seems to be working! I don't know if he has gained any weight yet, but he is MUCH perkier and happy.

I went into his room today to get him out of bed, and found him at the other end of his bed, turned around, and he had thrown ALL of his stuffed animals out or to the head of the bed.  He clapped & said  "Did dat!"  Ha!Ha! 

That is about it on the updates for now. I will try to get more pictures on here.  He is having a serious camera phobia right now. He turns away as soon as he sees anything that resembles a camera pointed in his direction! 

Hugs!~

Steph

New stuff!!!

The last couple days have been busy, busy, busy!

Monday, we went to Peoria to meet with a new doctor......a new Pulmonary doctor to replace the crazy one that we currently have.  He came highly recommended by a friend. She said that he was very thourough.....that is a euphamism for "pack a lunch".  LOL!  However, he IS very thourough.  He is now our new pulmonologist!  Yeah!  I would much rather have a pulmo at the same hospital that our cardilogist is at.

Unfortunately, I think I got a case of food poisoning.  I have NOT been that sick in a L-O-N-G time.  Not sure what that was, but when I got up at 4:30 Tuesday I felt like a new person. Whew!

Good thing because we were off to Chicago (LaRabida) for physical therapy today.  We LOVE our PT up there!  She is .....lively.  Christopher grumped the whole time, but I think it was more because he wasn't running the show.  LOL!  Mike, our friendly DME guy was there to take measurements for Christopher's new stander! He measures right in between two sizes, so we are going to have to figure out if we can swing the larger one to make it last longer. Can't wait to get this! 

Christopher did really well.  We were there for 2 hours.  He is now bending his knees at a 90 degree angle and putting weight on them.  We have found that he has one leg longer than the other. He is also showing signs of scoliosis.  For some reason, he twists to the left (from the waist up) when he sits or stands.  We don't know if this is some sort of stem thing or if he is compensating for something.  We have lots of work to do.  He is going to be getting measured for AFO's to help distribute weight evenly on his feet.  He will also be getting arch support and a lift in one shoe.

We also found out that at his next appointment, Christopher will get to try out a tryke!  Apparently, there is a couple who modifies Radio Flyer Trykes for free.  Christopher is on the list to get one of the trykes.  Yeah!  All falling in to place to get him outside more next year! 

That is about it for now.

Hugs!

Steph

The Lowdown...

Sorry for our lack in posts lately.  There really hasn't been too much that is "blog-worthy" lately.

Christopher did get his casts off on Sept 9. It wasn't as bad as we anticipated. His legs actually looked like he had just come back from surgery.  I was surprised that the incisions hadn't healed.  They have since healed nicely. I'll post some pictures of that below.

He had another seizure a couple of days before the casts came off. Another bizarre one. These last few almost look like how you will sometimes jerk just as you are falling asleep.  Except he does it hundreds of times. In between "jerks" he will normally look like he is trying to come out of it but will whine. This time, it was obvious that he was totally conscious! He would grab our arm and hold on like he was trying to stop the jerking. He would try to say "Mama" or "Dada" and would usually get cut off by another jerk. He was trying to sign "All done". Those aren't things that he would/could do if he was in "seizure fog".   It lasted for about 15 minutes.  Then just stopped - no easing out of it.  He will normally go right into a deep sleep after a seizure....this one he sat straight up and wanted to hug and kiss both of us.  He laughed and clapped his hands, then signed "Eat!" and grabbed for his feeding pump. 

Ever since that seizure, he has been a talking fool! He used to babble all of the time "dadadad" etc.  After he was really sick about 2 years ago, he never started it again. Now it is back! He is suddenly gaining a little weight (no ribs showing). He LOVES to count. He can count to "tree" (three) by himself.  He is counting to ten with me. He counts to three, I say four and five, he says "sic" and tries to say seven.  He is also trying to say eight, he lets me do nine and he will do ten. Then we clap. :)  

The house STILL has not sold.  We are getting a little desperate here. We have had one showing the entire month of September. We dropped it $10,000.  I am not sure what else to do.  We do NOT want to be here for winter.  Almost everything we own is at the other house already.  We just can't move in yet, or we will have to pay rent.  We can't afford both.

Big Chris started a new rotation at work.  Not many of the people out there like this rotation, but we LOVE it! He is working 6 a.m. to 6 p.m..  One week he will work 2 days, then have 2 days off, then work the weekend (Friday, Sat, Sun).  The next week, he is OFF 2 days, works 2 days, then has a 3 day weekend.  Sooooo much easier to plan appointments around.  He doesn't know it yet, but he is going to start participating in homeschooling.  Christopher sometimes does much better when Dad asks him to do things.  We are going to be taking advantage of that.  

Otherwise, we are just running, running, running all over the state.  Now that the casts have come off, Christopher is going to PT at least once a week in Chicago. He is doing REALLY well, and their goal is to get him to be able to at least climb 6 to 8 stairs (the amount that we have in our new house). They are going to order us a new stander that is properly fitted for him, and hopefully I can post about ordering a walker soon.  We will see.

This next week we go to Peoria on Monday to meet a new (to us) Pulmonologist.  If we like him, we are dropping pulmo in Milwaukee. I would feel more comfortable with a pulmo in Peoria anyway, as that is where his cardiologist is. On Tuesday, we go back to Chicago for PT again. Wednesday we have a home visit for our waiver program.  She needs to see our new house.  We are waiting to hear about an adventure that will be a separate blog post..... If that doesn't happen, we will be hitting the paint brushes at the new house on Big Chris's 3 day weekend.

Here are your pictures!

Before Surgery (Crazy Legs):

After Surgery (Grover Legs):

Casts Off Day/ Straight Legs!:

Hugs!

Steph



We are still here....

Sorry I didn't get anything else updated after surgery....Between computer issues and Christopher NOT being happy in his casts...it has been a long two weeks!

He came out of surgery OK. Woke up immediately and was mad/panicked ???  Part of the issue was the casts. The docs wrapped them VERY high up on his legs so that laying down the casts were cutting into his bottom and um....well, his pelvis in the front.  It was even worse when we tried to sit him up, which we wanted to do as soon as possible to keep his lungs clear. They finally ended up cutting them down a bit to a little over mid-thigh.  Still within the line of fire if the diaper malfunctions, but much better than they were.  :)

It has been hard to keep him comfortable the last two weeks.  He was HOT the first week or so - no fever, but his whole body felt like it was on fire. His heart rate while sleeping was between 150 - 170, which is WAY high.  Then he would get mad at not being able to move the way he wanted, whew!

He is down on pain meds - he actually did that fairly quickly. I wondered if the high heart rate was because of pain, but it doesn't seem to be.  He's just mad!  I think the medicine itself is also causing his heart rate to increase. There is also the thought that because the casts go completely up both legs, it is changing the way the blood vessels are reacting.

Otherwise, we have been dealing with crazy house stuff.  We dropped the price of the house $7000 this week. We have also been having some trouble with the mortgage company, but I think we are getting that straightened out. I just want OUT!   If anybody out there knows of somebody who needs a handicap accessible house that has been completely remodeled - send them our way!!!!

I am also getting my thoughts together about our lessons this year.  Last year was a bust.  We did school, but ended up following rabbit trails and didn't really stick to our plan.  Most of our school stuff is packed away right now, and I am not sure how much we would accomplish anyway - even with a captive audience.  I am thinking that we are going to wait to "officially" start school until late September - after the casts come off.

I do know that we are going to be concentrating on our alphabet, numbers 1-5, animals, transportation, various holiday stuff (turkeys, scarecrows, everything Christmas, etc).  I would like to get more in to art this year as well.  I think art projects are going to help us both with our theme and with sensory issues. It is also good OT work. Following directions and getting a consistent schedule is also going to be a big deal this year.

When we get to the new house, outdoor time is going to be a must. Christopher is like a mole and HATES being outside. We will have to work on this.  We have a pool, we are getting a small swing set, and I am already drawing out garden plans.  We are moving to a neighborhood that I grew up in, so I hope to be able to start walking again and/or bike rides. It is just hard to do with him around here. I am thinking messy art projects are going to be done outside as well.

One last thing, I have been invited to write a couple of times a month on another blog with a group of people all living with special needs.  If anybody has anything they would like to see tackled, leave me a message or shoot me an e-mail!  It can be anything, from questions about how you deal with social situations to where to find good information on medical issues, or even how others set up & store all their medical supplies!  Pretty much anything goes.....I will post a link when it gets up and running.

Hugs!

Steph

Aftermath....

So the surgery was finished around 2:00. Christopher then went to recovery. We told the anesthesiologists that he had a high tolerance to sedation. I guess they found out for themselves as he woke up immediately after and was raring to go! LOL!

So far he isn't acting terrible. Of course he is grumpy, with good reason. I think we are handling pain OK. He is getting morphine about every 3 hours. I am not sure if he is trying to move his legs and can't or if his sedation/morphine is still messing with him, but he will fall asleep for about 5 mins then wake up in a panic. They are going to give him some more here soon.
We JUST got him up in his little feeding chair. Looks like we are going to have to have the ortho cut down the tops of his casts so that they don't cut into his privates & abdomen. Dr. Personality - the resident, might not be on board for that. We will see what happens.

(Sorry for the quality of this pic - my phone is dying)
They were talking of the possibility of sending him home tomorrow. I don't think that is going to happen. We want to be back on his home feed regimine for 24 hours, and have a good plan for pain management before we go. He had 3 doses of powerful antibiotics before surgery because he has a heart defect, so I do not want to get 150 miles away and have blow outs running down his casts. YUCK!

Thanks to all for all of the good thoughts and prayers today! We will keep you updated.

Hugs!

Steph

Surgery!!

11:55 - They just called to say that he went to sleep perfectly & they have him on the vent.  He is prepped and they started the first incision as we were speaking to the nurse.


OK.  They just took him back a few minutes ago.  It will take awhile for anesthesia to do their thing & to get him prepped.  Then surgery will be 1 1/2 to 2 hours.  They are doing both legs at  the same time.  We are praying that he does NOT come back with Spica casts on - the ones that go all the way up to the rib cage. 

Will update when we receive one.  :)  I'll add pictures later. 

Hugs!

Steph

All the Goings-On....

Well, we have been jumping through hoops trying to get this surgery scheduled.  Long story short, we have a surgery date!  It looks like it is going to be July 26th.  I am MUCH happier that it will be on a Monday vs a Friday.  Not knowing how Christopher is going to respond to this, I feel much better knowing there is a full staff.

Another end result from all of this is that we have dropped another doc in Wisconsin.  I am not even going to go into that fiasco, we'll be here all night.  We have appointments both in Chicago and Peoria to interview new Pulmo docs. We also got on a waiting list for a new endo doc in Chicago. I am not impressed with the one in Peoria - that is why we left her the last time. That only leaves Genetics and Nephrology (kidney) docs in Milwaukee. We can handle that. We like both of those. We also don't want to completely cut ties, just in case we need to go back for GI issues. Everybody else is either in Chicago or Peoria. Both are only a 6 mile difference in drive for us. We'll take that! :)

Otherwise, we are still putting the finishing touches on the house to get it up for sale.  Should be up for sale before the end of the month.  Pray for a quick sale (but not too quick - I don't want to have to move during Christopher's surgery. LOL!)

Last, but never least  could you please say some prayers for Kristen and her family?  Kristen has fought leukemia FOUR TIMES!!!!  She just had a bone marrow transplant, and they have just found out that her leukemia is back.  Please say a prayer for her family that this transition be as easy and peaceful as possible for Kristen.

Hugs!

Steph

Mr. Crazy Legs

This is sort of a continuation of the last post.  This past week, we went back to LaRabida to meet with PT/OT and then an appointment with our Orthopedist.

We were on a mission to figure out what to do about Mr. Crazy Legs (see the pictures in the last post).  We started out in the big gym, which we normally don't do because of germs.  Christopher was having a ball!  He was checking out all of the other kids, many of whom were in pain, and I am sure he was thinking "better you than me bud!"  :( 

Anyway, we spent the better part of 2 hours having pictures of his legs taken in various angles and positions.  They wrapped and braced, dislocated and reduced joints...the child quite possibly had almost an entire 100 foot roll of Velcro wrapped around him from the waist down.  I didn't get pictures as it took four of us to get and hold everything in the correct alignment.

Then we had our appointment with Dr. Sullivan, our ortho.  We were the first appointment of the half day clinic, and he was an hour and 45 minutes late.  He was in surgery.  He swoops in with his entourage: his nurse, clinic nurse, PT, OT, and a couple of residents.  They all take turns examining Christopher, bending his legs into positions that would take serious drugs to be able to pull off with normal people.  Christopher was so good!  He just laid there playing with his toys letting them bend him like Gumby.

The Verdict:

First the good news: Dr. Sullivan thinks that Christopher will eventually stand on his own, and may even be able to walk short distances.  He most certainly will be able to eventually crawl.  Standing was my biggest issue.  If he can stand, he can help to transfer from his wheelchair to the bed, chair, toilet, etc. 

Now the bad news:  In order for that to happen, Christopher will need some pretty significant surgery and heavy duty braces, possibly for the rest of his life.  The braces I don't mind.  I am not terribly excited about another surgery. The fact that this is going to have to happen sooner rather than later doesn't help. 

Since our last visit, about 3 weeks ago, Christopher's lower legs have gone from pulling out to a 30 degree angle to about 50 degrees.  If we do not get the surgery soon, his legs will be permanently misaligned.  Things are moving too fast to even consider doing this with braces or tape.  Even 3 weeks ago, they could put his kneecaps back into place with effort. Now, they don't go at all.

The surgery will consist of the doctor cutting or "releasing" the tendons around his knees.  He will tighten some and reposition others to stretch them.  He will also be repositioning Christopher's kneecaps (patellas) and sewing them into place so that they don't dislocate anymore.  Then Christopher will be in casts from hips to toes on both legs for 4 to 6 weeks.  Pray for no GI issues or blowouts during this time - that could be disastrous for all!  Ha!Ha!

Dr. Sullivan is nervous about this surgery.  He is a VERY conservative Ortho surgeon.  Surgery is always his last option.  We have passed GO and he is collecting our $200+ this time.  He made the comment that he is always nervous operating on kids with Down syndrome.  He has had a few that have had bad seizures going in to or coming out of anesthesia.  So, I pipe up and tell him, "That's OK, he already HAS seizures!"    
NOT HELPING!

The result of that is that Christopher's neurologist is going to be there as well. Anesthesia really is one of the most dangerous things for a child with seizures.  We meet with the neuro on Tuesday and will have more information after that.

We also discussed with Dr. Sullivan the fact that Christopher was supposed to have the muscle biopsy in Milwaukee soon (on cue - Milwaukee called my cell in the office to schedule surgery!).  Dr. Sullivan said that he could do the biopsy if we wanted, but his concern was that Christopher has such a small amount of muscle.  The biopsy needs to be the size of a sugar cube.  A sample that size would almost sever his quad muscle (your front, upper thigh muscle) in half!  For you or I, that would heal and we would recoup.  For Christopher, he is concerned that he will NEVER heal and that would mean that there would be no chance of walking and make it very difficult to stand. 

So, I am leaning towards not doing the biopsy at all.  I am not sure that we will get any answers from it in the first place.  I would rather fix his knees right now, and go back in the future if we think it still needs to be done.  Maybe by then, we can figure a way for Christopher to build up more muscle.  The problem is, we don't know if he CAN make muscle. 

The surgery in Milwaukee was also supposed to include a dental exam, a bronch, and an EMG (muscle tests).  Originally, Dr. Sullivan was going to try to find somebody to broch Christopher during this surgery for us.  I have decided that is too much.  We have made an appointment with a new pulmonary doc in Chicago.  We will deal with a bronch later.  We really like our doctor in Milwaukee, but it is just so far to go.  The EMG is a test to see if the messages from the nerves are getting to where they need to be.  We WILL be asking our neuro to do this test.  We think it is important information, and we are at a point where we need the info to plan our therapy effectively.

So, surgery is tentatively scheduled for June 11, 2010.  They will most likely be putting him in the night before the actual surgery to give him prophylactic antibiotics because he is a heart kid.  That will allow us to get blood work, chest x-rays, etc done that we would have to do the morning of... Normally, this would be a surgery that they would do a 23 hour hold for.  We are not normal.  :)  We are probably looking at a 4 or 5 day stay, to get Christopher back to baseline and because the surgery will happen on a Friday.  I expect he won't want to release him until Monday.

While we LOVE our doctors in Chicago and the hospital, it is a GIANT, expensive pain to stay there.  All of the parking garages are owned by the City.  The DISCOUNTED parking rate in $33 per night.  I am a brave person and grew up in some not so nice areas of town, but even I am not brave enough to jump in my mini-van &  cruise the south side of Chicago to stop at Harold's Chicken Shack or Chef Alfredo's for dinner!!!  The one cafeteria is 4 buildings away.  We will have to pack stuff to take with us.  They do have fridges & kitchens on each floor.  Still.....pray for a short stay, or we will have to start hocking body parts in order to afford it (We'll start with Big Chris - LOL!).

Well, we will update after our appointment on Tuesday.  We should have more information then.

Hugs!

Steph

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.

Make an on-line slide show at www.OneTrueMedia.com

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!

Hugs!

Steph

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!

Hugs!

Steph

*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.  :)

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!

Hugs!

Steph

Speech....

We have been working A LOT with Lil Man's communication lately. I say communication because, just like everything else in our lives, we use a jumble of different things to help him get his point across. He vary rarely has an issue letting you know when he is frustrated or just not happy with something. :)

We have been taking him to Rehab Institute of Chicago for Augmentative Communication Therapy (Roger Ebert also goes here - same clinic). He has only been twice, but already he is showing soooooo much improvement! The last time we were there, they told us we didn't have to come back for awhile. They have given us a modified PECS system to use with him. He has 4 or 5 laminated sheets hooked together with a ring. On each sheet, there are 8 squares, each with a different picture in them. Some are his favorite toys, one is a kleenex (I'll explain that in a minute), others are action words (watch T.V., throw a ball, etc).

The goal is to go through each square and look for SOME consistent reaction from him. Ideally, he would either sign yes or no, or point to what he wanted. With him though, we don't always get that. If he is overwhelmed, you will be lucky to get eye contact. So, we go through each square and look for a reaction. The Kleenex is purposely put in there to check and see if he is just giving a reaction to get you out of his face. So, if he really wants his toy, but reacts on Kleenex - he gets the Kleenex. It weeds out the behavioral control issues from true commuication skills. Not that behavioural control is not communication in itself. Its a little confusing. Sometimes his behavior is the only thing that he has control of in his world.

I am going to be working on getting some new sheets put together.  There are several programs out there for this, but I think it will be easier to take a picture of what we are targeting (specific toy, HIS bed, etc).  Obviously, there are some things we can't take pictures of.  I have lots of pitures of the signs for those things (i.e. hurt, want, all done, etc)  I think I will use those.  It will also reinforce his sign usage. 

They have commuication devices that do the same thing.  When you bush the button/picture, the device "says" what the picutre is.  There are several types out there from simple 1 picture ones to 20 picture or more ones.  Like these.  If you went to the link, you will see they are also very pricey.  Our insurance will help cover one device every 5 or 6 years.  So we have to anticipate what Lil Man's needs will be 5 or 6 years from now. 

The therapists have tried several of these devices with Lil Man.  What they didn't realize before we started trying them out, was that Lil Man doesn't like too many toys that aren't push button/feedback toys.  He likes lights and music especially.  He doesn't seem to care too much for action (like robots, etc). I think it is too hard for him to track.  If left to his own devices, he will self stim with most of these toys.  Anyway, he mastered all but the 20 picture device in a 30 minute session....ahem.

That means that the next step is an actual computerized device.  This will last MUCH longer, is customizable, and also MUCH more expensive.  These are the ones we are looking at.  They kind of look like a huge iPhone. 

We will still be continuing with regular speech therapy.  He does have a few words, and those he does have we would like to be clear to others when he says them.  I don't know if he will ever be able to eat by mouth.  Not so much because he physically can't/won't do it, but because of the reflux.  Have to protect those lungs!

One obstacle that we have to overcome is his brain damage.  This is an ever present demon with regards to his abilities.  On paper and on his MRI's, EEG's, etc, he should be in a persistant vegitative state.  He is literally missing AT LEAST half of his brain matter.  Beacause the O.B. that I had deleted every...ultrasound...the night he was born, we have no idea what he started with.  We don't know if his brain had formed normally and this is mostly stroke damage, or if it formed incorrectly from the get-go and more damage was done from the stroke, crashes, etc.  Either way, he has stroke damage, damage from thousands of seizures, damage from poor perfusion, damage from crashing so many times....Lots of damage through out his brain.  It is VERY obvious to anybody who meets or examines him that he has "re-wired" himself.  There are entire chunks of brain missing that "should" be controlling specific things - i.e. speech, emotion, etc. 

He seems to have a full range of emotions - he is not "flat", doesn't have rages, etc.  He has normal temper tantrums, but they are few and far between and don't last long.  Recognizing others' emotions is a developmental milestone that we haven't reached consistently.  He uses about 10 signs consistently.  He uses about 10 verbal words consistently, but if he learns a new one he will drop an old one.  Every once in awhile he will "parrot" something VERY clearly and may repeat it ten times within an hour.  Come back and ask him to say it the next day, and you will never hear it again. 

He does comprehend most of what is being said to him. If he didn't, he couldn't give you the "evil eye" and do exactly the opposite of what you are asking!  Expressing his wishes without prompting is an issue.  I have done a lot of research on speech, reading, and learning patterns of people with Down syndrome.  For many, speech "kicks in" AFTER starting to learn to read.  We don't know if those typical learning patterns will hold true for him.  "Typical" is NOT a word that applies to us very often!  :) 

This didn't start out as another long post, sorry!  We will keep you updated as we progress.  We welcome any and all ideas that you would like to pass on to us!  Thanks for stopping by! 

Hugs!

Steph

I'm a Slacker - We Need Your Help!

First, I want to apologise again for my lack in posts. We have had the crud since before Halloween and I am JUST now feeling like I am not drowning. I still have a cough and zero energy, but that is 200% better than what I was 2 weeks ago. :)

Lil Man has been doing sooooooo well. I am afraid to post about it for fear I would jinx it! I don't know what happened with that seizure back in October, but it seemed to "reset" something in his brain. He has been doing so well with his school work, his attention span, even sitting! Last night, about 2 a.m., he signed "school" to me - he wanted school work!!! (Well, it didn't reset his internal clock - we are still working on that.)

We go to Chicago tomorrow to see the ortho. Hopefully he can figure out a non-surgical way to get Lil Man's kneecaps back where they belong. He used to be able to dislocate them at will - they would pop back and forth. He seemed to PREFER them dislocated - ah the joys of hypotonia. Now, the ligaments in his legs have started to tighten up. The kneecaps are permanently dislocated to the sides of his legs (outsides). We can't get them to go back and now Lil Man can't straighten his legs all the way. We shall see what the solution is for this.

Here is the part where we need your help:

OK - ATTENTION ALL BLOGGER FAMILY - WE NEED YOUR HELP! Please follow the link below and vote for Christopher. We are entered in a Christmas cash giveaway from an organization that we are sooooo thankful to be a part of. They assign members to pray for your family and child when they are sick. Some even come to the hospital to help out with things like meals and such. They are doing a giveaway and the awards are by vote. You can only vote once per e-mail address - they don't sell your information. Just click on "Christmas Cash Giveaway", enter your info, and click on "Christopher Moore" in the drop down box. Thanks so much for your help. The only really sad part is how MANY sick children there are to vote for. :(

http://www.colesfoundation.org/

Thanks so much for your help - More posts coming soon - I promise!

Big Hugs!

Steph

Chicago trip - Part I

WOW! What a week. We feel like we were gone two weeks instead of two days. We did a lot in those two days.

Monday, his appointment with Dr. Suskind, ENT, was at nine in the morning. This meant that we had to leave home by 5. You never know what you are going to run in to with Chicago traffic. That also meant that Mommy didn't get any sleep, and Daddy got very little. We made the trip in 2 hours, and were almost 2 hours early for his appointment. THAT never happens. :)

We first saw the Resident, who cleaned out Lil Man's ears. Other than being full of hard wax, they looked pretty good. His one tube is still in the ear drum, so they didn't pull it out. The other came out the last time. He did NOT like getting his ears cleaned out. They put him in a papoose, which he does actually like. But mean Mommy had to hold his head still so they could clean him out. Not good.

Then he had his hearing tests. He passed easily in the ear with the tube and missed passing by 1% in the ear without. This is a HUGE improvement, though, almost double from last time. We are very happy. Dr. Suskind said that she has no doubts that he is actually hearing fine in the one ear. She said it is the one with the crooked ear canal, and the are very tiny. It is just hard to get a good reading more than anything. Daddy took him into the sound proof booth for the other test. He was more interested in flirting with the girl that was in there with them than responding to the test the way he should. He was trying to reach out and touch her hair. LOL! She had really long, black, shiny hair. Here is a picture of Lil Man getting the first hearing test done. He was enthralled with Barney.

We then talked to Dr. Suskind again. She wants to see him back in 6 months to check that tube, and decide then if we are going to put another set in. She also referred us to her speech therapist, Dana SusMAN. W have met with her before and really liked her, but it has been at least 2 years, maybe 3. Dr. Suskind looked at the stuff going on in Lil Man's nose - it has a HUGE scab every morning that completely blocks his airway there. She said that he has cellulitis and that we need to watch it very carefully. I just hope that it doesn't a. spread, or b. leave a huge scar. Luckily, the fix was bactroban cream. I think we own stock in this stuff. We use it for his G-tube site when it gets icky, so we didn't have to buy anything new.

After this, we headed south again to our hotel. We stayed at the Holiday Inn Express in Monee, IL. I TOTALLY recommend it if you have to stay up north. The rooms were soooooooo clean! They let us check in early and we lugged all of our stuff up to our room. We got everything set up so we didn't have too much to do when we got back that evening. The room had a King size bed, a fridge, microwave, coffee pot, couch. Really nice. Wireless Internet and breakfast was provided. We didn't end up using either. LOL!

Then we headed back into Chicago. FYI, for those who decide they want to visit Lincoln Park Zoo or any of the attractions close to there - DO NOT follow Mapquest/Google directions. Head on over to Lake Shore Drive and go in from that way. We spent almost 2 hours in traffic on the Stevenson to go to a couple of blocks over from where we just came from!!!! That really put a time crunch on our day. Up to then we were running early or right on time on our agenda.

After we circled the block a few times to figure out where the parking lot was, we hit the Chicago History Museum first. This isn't a huge museum, and there aren't a LOT of exhibits. The ones they have are done really well. They are all very interesting. Very kid friendly, but not a lot of the interactive stuff throughout the museum. There is a separate exhibit for kids to experience Chicago with their 5 senses. This is where we got the picture of Sr riding the big, old bike. I was really interested in seeing the Abraham Lincoln exhibits that were touted. They weren't bad, but they weren't THAT impressive either. If you are looking for Abe Lincoln stuff - go to Springfield. Sr is into the World's Fair in 18??. There was a good amount of interesting stuff on this and the Chicago Fire. We were able to get through the entire museum and the gift shop in about 2 hours. It really wasn't that busy, although a group of kids came in just as we were leaving. All in all not bad - for free. Mondays are frre and you can go to the website to see other days that they have for free. Here is a little slidshow of some of the interesting things in the museum. The diorama's of Chicago are really neat!

Make an on-line slide show at www.OneTrueMedia.com

We walked back down to the Zoo after the museum. It was about a mile - mile and a half walk. It wasn't too bad, but it was humid out. It could have been A LOT worse, so we weren't complaining too much. And there was a breeze coming in off of the lake, so that was nice.
Lincoln Park Zoo is so worth it! It is free and open 365 days a year. The prices in the gift shops and for drinks and such were not really much more than we are paying downstate. If you go, make sure you plan for the whole day. Bring a lunch and have a picnic or have lunch at one of the the shops. Everything was CLEAN, and landscaped. You weren't going uphill in every direction like St. Louis zoo. There are several shows per day and a chance to pet some of the more exotic animals, but we missed that by the time we got there. Most of the animals were going in as it was close to closing, and I suspect, feeding time. We plan to go back sometime. Even if for just a few hours. Lil Man enjoyed just being outside and watching other kids play. He did see the lions and heard them roar - loudly! He was also able to kind-of see the penguins. He knew what was in there. The windows were steamed up a bit.

Photo and video editing at www.OneTrueMedia.com

We left at closing time. We ended up getting lost in downtown Chicago. We got the $3 tour and ended up driving down Michigan Avenue, "The Magnificent Mile." Of course Sr is in the back shouting look at that , look over here ....etc. I am trying to dodge taxis and people who actually KNOW what they are doing. LOL! We ended up in the back of Water Tower place. I finally figured out how to get to the highway. We could see it, we just couldn't get there. By this time it was about 7 and we stopped for dinner at Fudruckers. Lil Man really enjoyed that. There were only about 3 other people in there and they had the music going. He was "dancing" for us.

We got back to the hotel about 8 - 8:30. Got Lil Man into the room and were settling in. Our battery had ran down on the camera at the zoo and I was trying to figure out how to make sure it was charged for the next day. I picked Lil Man up and we had a replay of the blowout when Papa and I took him to see the neurologist! Same darn overalls! I am going to quit putting him in those.....What a mess. After we got him cleaned up and recovered - we all fell asleep before 10:00!!!! That NEVER happens. We slept - hard - until the alarm went off the next morning too.

Stay tuned for Part II......

****Please let me know if you are able to see the slide shows. I can see them on the other site where I make them, but cannot see them once I put them on the blog. This is a problem with my computer or browser - something. I have trouble seeing pictures posted on other's blogs too. However, I can't tell if things are working correctly. I would appreciate it you could leave a comment if you can't see the shows. Actually, feel free to leave a comment anyway. LOL!******