Juggling the challenges

Lately I feel a bit like a juggler who tries very hard but just can't manage to keep all the balls in the air.  It is overwhelming.

First there are the plethora of  medical issues my sons deal with.  My oldest really hasn't been able to walk for most of the last 6 weeks.  He switched from AFO's hinged rigid plastic braces that go under his foot and most of the way up his cast into orthotics (go inside the shoe) and highcut hiking boots.  This transition has not been a smoothe one.  Many adjustments have been made.  Sometimes it was hard to get the orthotist to understand that with EDS my kids can't always wait the typical 4 weeks to do the changes.  As a result the calcaneus (a  bone at the ankle/heel) which the tibia and fibia rest on kept dislocating.  Finally Andrew was starting to make some progress.  He could touch his foot to the floor while sitting in his wheelchair and tollerate the pain.  He started to take some tentative steps (indoors only).  We were all ready to celebrate with him.  About an hour later the calcaneus in both feet dislocated.  He has been back in the wheelchair ever since.  We have added ASO anklebraces to the mix now as well.  They are helping but the progress is slow and I think that this time Andrew is a little more reluctant to start taking risks to use his feet because the pain and discomfort have been so high.  The physical therapist is coming twice a week to treat the pain and try to maintain strength in the legs so that he still has muscle tone when he starts to walk again.  It is hard to watch your son in pain and struggling to do so many things when he really wants to be independent.

On the positive side Ken installed the grab bars at the bottom of the stairs so that transfers can be done a bit more safely.

An added difficulty through all of this is that his power wheelchair wasn't working.  The batteries were dying so it wouldn't hold a charge.  This meant that Andrew has had to depend on the mannual chairs to get around at home and in the community.  Fortunately, the new batteries for Andrew's whellchair arrived on Friday and have been fully charged.  I am hoping that we can plan a few activities outside the home this week where he can use the powerchair and have more independence.

Josh is doing fairly well overall.  He needs to get his medications reassessed because I don't think that the reflux meds are working as well as they should.  Josh is often waking in the night with reflux.  I need to be more persistant on the phone to get through to the doctors.

At 14, I know that it is a matter of time before Josh starts a major growth spurt.  His brother grew 7 inches in 12 months at 14.  Josh has always been a slighter build but in the last few months he has been packing on thepounds and eating a lot more that usual.  that is saying something when he is a grazer all day long.  Because we know that growth results in increased instability and dislocations I wanted to make sure that Josh's wheelchair fit before he desperately needs it.  His current powerchair (which was grown in October)isn't 3 years old yet but it is too small.   The process to get a new chair can take months so we have gotten started.  The vendor commented that she had never ordered a 23 inch seat pan for a chair before ~ I guess that Josh will be a first for her.  This week the trial chair came for Josh to test.  In theory this chair should last  for 5 years but none of Josh's chairs have ever lasted as long as they should over the years.  While the trial is on Josh has 2 powerchairs in the house to juggle.  ADP, the government program that helps fund big equipment, is about 6 months behind on their approvals.  Hopefully everything will come together in time for Josh.  In case you were wondering a powerchair these days costs about $ 20,000.  It is a lot like buying a car.

Both boys were down to Hamilton last month to see the orthopedic surgeon who monitors their scoliosis.  Andrew's curve is not at about 27 degrees but there isn't much beyond physio that can be done to help him.    Andrew was disappointed to hear that it looks like he will continue to grow until he is about 19.  He would really like to be finsihed with the hope that a good strenghtening program will decrease the 50+ dislocations he has each day.  I am really hoping that the rib dislocations will settle down especially in the middle of the night.  I would give a lot for a full night of sleep.  Josh's 2 curves haven't changed significantly but he will have to be monitored as he grows to asses if further intervention will be needed.

Another issue that has taken a great deal of emotional energy lately is the curch we have attended for the last 7 years.  There have been a number of conflicts over the last year.  Many of which were not handled well.  As a result the tension as church has been palpable for months.  Most of the families with young children have left as a result.  We have really struggled with what to do.  Finally 2 weeks ago we decided to look for a new church home for Sunday worship.  This wasn't an easy decision because we all have some very deep attatchments but we have a son who feels a call to ministry and don't feel that this congregation is in a position to be supportive for him on this journey.  I have also seen several families where the kids stopped wanting to come to church becuase of all the conflict.  This was not what we wanted to happen for our kids.  Last Sunday and again today we are stepping out in faith with lots lof allergy meds on board (you would be amazed at all the places latex hides) to explore new churches.  We will decide as a family when we have found the right church to call home.  Just making the decision to start looking feels like a weight has been lifted. 

to be continued later today.....

It took all day but I finally made it back to the computer. 

The roads were nasty this morning when I went to work.  thankfully I made it home again in one piece by 9 so we could get ready to go to church.  We wnet to Harcourt Memorial today and it was quite wonderful.  During the week Andrew had learned a bit about the church through his guide from the Eccumenical Week of Guided Prayer so he asked if we could go today.  It was definately a good choice.  It was accessible, welcoming and very friendly.   There was a baptism which was beautiful with all the children assisting to bless and warm the water for the baby.  The teen programs were very welcoming too.  I expect that we will be returning.

After church we hustled home so that Ken could head out for his rehearsal for Twelfth Night from 1-9.  His rehearsal this time  have been horrible.  We rarely know until a day or two ahead when he will be needed and the practices are thursday, Friday, Saturday and Sunday each week.  I am glad that Ken enjoys his theatre but I will be very glad when this show is over.  Reheasals started back in November before the Christmas show run even started.  The boys would like to be able to make plans to have friends over but we can barely plan before Fridays so it is hard.

Time to buckle down and get everyone back on track.

Splint making 101

Andrew is back to dictating his school work due to unstable wrists.  The radius keeps popping up and crossing over the other bone in the forearm where it gets stuck.  This is very painful.  The off the shelf splint wasn't helping at all.  We had one clam shell splint from the last time this happened.  It needed a bit of work because the latex free tensor was biting the dust. 

I must confess that I have a bad habit of hoarding any old splints because I might find a way to use it differently another time.  Splint making materials also happen to be a bit on the expensive side.

I gathered up some cotton knit stocking tube and foam.

I covered the foam with stocking tube.  I couldn't find anymore tongue depressors so this time I raided the classroom for small rulers to sew down the middle.

Next step was adding the adhesive backed vlecro.

Finally I added vellofoam straps.

Now he is good to go. 

He just needs the wrists to calm down again but that can take several weeks.  So I see a lot of scribing in our future again.

Always a new challenge

As the boys grow their joints become more unstable and painful.  Last Sunday Josh woke up with a dislocated shoulder.  I had a lot of difficulty reducing it completely and it continued to dislocate over 30 times that day.  Of course the shoulder that dislocated is the left one and he is left handed.

Just to keep life interesting on Tuesday morning Josh twisted his right ankle.  He had some swelling and a lot of discomfort.  He also vommitted a few times but that may have been due to pain.  He had a day of bedrest and RICE.  Wednesday morning when I re-evaluated the ankle it was rolling in about 30 degrees.  Based on my past experience I knew that the ankle needed a lot of support.  Unfortunately the ankle could still roll in the AFO so Josh is now in an aircast. 

Now this is where life gets interesting because Josh doesn't have the shoulder stability to use his walker or crutches so he is in the wheelchair full time.  We had enjoyed a nice break from full time wheelchairs.   Wednesday morning before leaving for work I had to go through the house and re-arrange things to make sure that Josh could get everywhere he needed to in the wheelchair.  Now i just need to figure out what to do with the palm tree in the bathroom before Josh hits it and dumps it everywhere.

Andrew's wrist (the right one of course!) started causing him problems yesterday.  The two bones in his forarm are rolling and crossing and then getting stuck.  This means that he is back in a clam shell splint to hold everything together.  Unfortunately, the latex free tensor and clips never stay on place at night. So this morning I added adhesive velcro on the outer sides of the splint and cut vellofoam to hold it.

Andrew is getting reaquainted with Maplesoft so that he can do his math work on the computer without having to dictate.  I really need to find someone who can do some tutoring for us so that the boys can get the most out of the program.  If you want to find out more about it check out:  http://www.maplesoft.com/

Today I am hoping that our physical therapist will arrive and work some of her magic so that the boys are more comfortable.

I would be really happy if we could go a day without any new medical excitement.

Growing Pains

Both boys appear to be growing like weeds again. 

Andrew's ankle foot orthotics which were new at the end of May are too small despite 3 rounds of modifications.  We are waiting to hear if the assistive devices program will cover the new set.  I really hope since they cost about $3,500.  His wheelchair is almost too small again and it is only 2 years old now.  New power wheelcahairs cost as much as some cars.  Lots of prayers for coverage on the chair because I know that the time is coming soon.  Power chairs cost around $20,000 each.

Josh is also showing signs of a growth spurt.  His hamstring muscles are so tight that he can barely take a large step.  The physio therapist is concerned that the tight muscles are going to pull on the spine and pelvis making the curve in his spine worse.  I am so thankful that he will see the surgeon at McMaster in a couple more weeks.  At that appointment I am hoping that we will begin to form a treatment plan.  Bracing Josh's back is going to be very difficult since it will have to be both latex and nickel free.  This morning I had to change the modifications on Josh's desk chair because he is getting so big.

We are trying out a TENs unit this week to see if it can help with mucles spasms and pain management.

The rain today is not helping with the joint pain the boys are experiencing.

Prayers for a bit of relief are always welcome.